Day 5: 5 Days of Brinkley

Year 4 has was full of surprises as he grew and matured in so many ways.  He headed back to preschool for the second year and first official full year of 3K.  The highlight of the year was our very first family trip to Disney World!  The Toy Story ride was his favorite.  Llama Llama Red Pajama was a hit for Halloween.  Brinkley on the shelf made his return.  The new year brought some challenges as we unexpectedly faced surgery to replace his damaged pacemaker.  He took it like a champ and rocked that surgery with a short hospital stay.  We enjoyed a couple of stays at the beach where he found his happy place with his toes in the sand.  His personality started coming out in big ways and he proved he is the king of mischief in this house! If you are keeping score the hospital count is now 36 weeks and 9 surgeries.  

Day 4: 5 Days of Brinkley

Year 3 Brinkley learned to walk on his own (without his walker) and started preschool for the first time. We had the privilege of becoming a "miracle family" for Children's Hospital and representing the hospital all over the region. We met some wonderful folks including the Furman Men's Lacrosse team who quickly became his buddies and lead him to love all things Furman. We made our first trip to NYC to see him featured on the screen in Time Square and walk in the NYC Buddy Walk. (The subway and meeting his friend Freddie were his favorite parts.) Brinkley on the shelf made his first appearance.  Dr. Brinkley had his g-tube closed and one other surgery. We added a few more weeks of hospital stay to the count. The doctor appointments began to slow down a bit and therapy kept going strong.

Day 3: 5 Days of Brinkley

Year two came with fewer hospital stays (4-6 weeks), lots of progress in therapy, learning to sit and stand on his own, finally eating baby food, and tons more love and snuggles. He graduated from in-home nursing care and we started using aid services. We still had far more doctor and therapy appointments than I care to count but we spent the majority of our time out of the hospital and had only 2 minor surgeries.

Day 2: 5 Days of Brinkley

Year one included 26 weeks of hospital stay, 2 emergency open heart surgeries, 2 other surgeries, numerous ambulance rides, 2 medical flights, hundreds of doctors appointments (honestly I can't count them all), nearly 100 therapy sessions, more ER visits than I care to count, millions of snuggles & hugs, prayers from all over the world (literally), building an incredible care team, and watching our faith grow. It's not the first year stats that I would have wished for, but it's what the Lord BLESSED us with.

Yes, it was a blessing! We learned the trust the Lord, lean on each other, and to embrace and celebrate every small victory. I learned to see the Lord in the small things and to trust the instincts that He placed inside me. I learned to seek wisdom in ways I never would have otherwise. We built an incredible care team that loves this little guy almost as much as we do. I met some amazing people and have had the privilege to walk alongside them in their journey with their children. I have met wonderful medical professionals whom I have been able to pray with and for and to encourage and love on as they have loved us.

Though it is not what I would have planned or wished for, when we embraced the situation that we were in and asked the Lord to use it, He did! He has been faithful to make this very difficult journey one that is filled with joy. I praise Him for the victories and the lessons learned.

Day 1: 5 Days of Brinkley

Brinkley turns 5 in 5 days so here's to 5 days of Brinkley. Day 1: we welcomed our 3 lb wonder into the world with the help of a team of 10+ people. He was six weeks early due to complications and we had the NICU team ready to help breathe life into a baby they expected to be blue and lifeless. As is his style, he surprised us all and came out loud and proud with no assistance needed. He was quickly whisked away to see cardiology and the team of NICU doctors. I was finally able to see and hold him the next day. He was so tiny! That's half of a cloth diaper covering his entire body.

A New Year and A New Teacher

It's been a while, a long while.  A lot longer than I realized quite honestly.  Sorry about that.  As you know, life happens and right now life is happening really fast for me.  With that in mind, let's get to the point.  

It's back to school time! I, for one, could not be more excited about that.  Both of my boys thrive on structure and routine and I did a terrible job of making that happen this summer so the return of school has been long overdue.  Reese misses his buddies and Brinkley asks, almost daily, for Mrs. Young.  He'll grab his bag and stand at the door saying, "see Mrs. Young."  When I tell him not today his response is always, "I love Mrs. Young."  Well, your wish is about to come true!

Reese starts back tomorrow and Brinkley will have a home visit this week and start back next week.  This year will be a little different for both of my boys so prayers for a great transition are much appreciated.  Reese has spent the last two years with the same teacher and students as they looped together.  He also had the privilege of being in Mrs. Meares class again since she moved from kindergarten to 3rd grade Science.  Change is hard for him and this year will be totally new.  A new classroom teacher and a new Science teacher.  He finished 3rd grade very strong and I am looking forward to seeing how well he is going to do in 4th grade.  

Brinkley will be seeing some changes as well.  He has been in the same classroom the last two years as well.  This year he will be returning to his beloved Mrs. Young's self-contained class for children with developmental delays, but he will also get to experience something new.  I am so excited that he is going to doing inclusion in the traditional K4 class as well.  This is a huge step for him and us.  He thrives in an environment where he is challenged by the model of other children without delays.  I can not wait to see how he grows through this experience.  

Since both boys are moving into new territory with new teachers I thought it would be helpful to introduce the teachers to my boys ahead of time.  I put together these "Meet the Holders" sheets, for lack of a better name.  

Meet Brinkley

Meet Reese

A Poop Standoff

If you know much about Brinkley, you know he is stubborn and quite determined to do things his own way in his own time.  (Anyone follow the apology standoff a couple of months ago?)  This hospital admission has been no different.  

We checked in dark and early Monday morning for his heart cath and we've been here ever since.  The cath went well and they ballooned his right pulmonary artery.  We were admitted for observation overnight.  In the process, we found out that there were some issues that had arisen with the OR and surgeon's schedule so we were on standby for surgery.  It worked out that we were able to get an OR and have the surgery on Wednesday (the original plan was Thursday).  Surgery went well and as planned.  He spent the night in the PCICU (Pediatric Cardiac Intensive Care Unit).  He had some episodes where he would scream out with pain and squirm around like he was trying to get relief from the pain.  This happened periodically over the next few days with most of the episodes being through the night.  (Very little sleep was had by anyone.)  

We determined that these seemed to be related to the fact that he had not pooped since Monday.  The gut may have already been irritated and full when he went into surgery.  The fact that he is so small and the GI tract is so close to the area where they were working made it feasible that he was having severe gas pain.   Add that pain to the pain from the incision (C-section moms you know what I'm talking about) and it was a recipe for disaster.  At the same time, his incision started draining (clear fluid not puss).  The thought was that the pressure from the gas pains may be causing the drainage.  

We started a protocol to remedy the poop standoff.  Apparently, Brink's GI tract is just as stubborn as he is and things have not moved very quickly even with interventions.  Yesterday we finally got a little poop and we've been more than 24 hours without a pain episode.  However, the drainage has not stopped.  It does appear to have drained less in the last 24 hours, but it hasn't stopped.  

The head of cardiology and the attending pediatrician are both pleased with his progress on the general side of things and are ready to send him home.  At this point, we are waiting on the surgeon to feel the same.  Our surgeon is not on duty this weekend so we've been seeing his partner this weekend.  We should see him tomorrow and hopefully get a better idea of what to expect.  

For now, we will continue to wait for some more poop action and the drainage to stop.  In the meantime, big brother is enjoying the beach.  Brink's a little jealous (mom too)!

Sick Kids Strong Moms

This morning I came across a video that I have seen posted several times on Facebook.  This time I actually took the time to stop and watch it and read the accompanying article.  It was so timely for both myself and the friend that had posted it. Take a minute and check it out:

Sick Kids Strong Moms

This is me.  This is so many of the wonderful women that I have met over the last four and a half years.  You may think you know what I deal with on a daily basis and you may think you understand how I feel.  Unless you have walked this journey you have no idea.  Until you've stood before a medical team and made literal life and death decisions about your child and spent weeks and months in the hospital you can't possibly understand the burden that we bear.  Even as a hospital mom or a medically complex mom, we've all traveled different roads.  We may not know the intricacies of each diagnosis but we have an undeniable bond that others will never understand.  

No matter the decisions that we face and the endless doctor visits, hospital stays, surgeries, and medical procedures I would dare say that most of us agree that we have been incredibly blessed.  I know that sounds ludicrous to most people.  How can all of this be a blessing?  First and foremost, look at the incredible miracle that we get to love and hold in our arms each and every day!  

Second, as Christ followers, we get to see God's hand in tangible ways that others may never experience (or pay attention to). God reveals Himself to us in ways that we would not have understood were we in any other situation.  So many times we walk in Abraham's footprints and lay our children down trusting that the Lord is faithful and will do what he has said.  We wait for our ram and we see miracles happen for us and/or in the families around us.  

Third, we have each other!  I wish I had the words to explain to you the incredible blessing that it is to look at another mom and see it.  You don't even have to say a word.  You can see it in her eyes.  She gets you!  She gets it!  Our stories may be different but our hearts are the same.  Her child may be primarily dealing with neurology while I'm dealing with cardiology, but we get it!  I have met some incredible women over the last few years.  They get me, inspire me, and challenge me!  Some of them I've met at the hospital or through other parents.  Many of them I've met at our therapy center.  While our kids are getting their physical, occupational, and speech therapy we get a little therapy of our own.  I look forward to those days each week knowing that, even if for just a short time, I can just be me!  If no other time, for those couple of hours that day someone truly understands and gets me.  I love my support system and look forward to those days all week.  You ladies know who you are and I love you and am blessed and proud to call you friend!

Soapbox: Communication

In the 19th-century and early 20th-century cardboard boxes didn't exist.  Instead, wooden crates were used for shipping goods.  Discarded crates could be found easily in most areas.  These "soapboxes" made great platforms for those who had a message to share. These messages were most often political or religious in nature.  Today's equivalent could be a blog.  

Pardon me while I turn my crate over and step up...

As a high school student, I was a member of the forensics team.  (No, not the CSI-type forensics.  Forensic meaning argumentative or rhetorical.)  I had an incredible coach who made a huge impact on my life.  She was and continues to be one of the most influential people in my life.  Not a day goes by that I don't think about her and use something that she taught me all those years ago.  (Thank you, Gladys Robertson!)  

Ms. Robertson taught me that words have power, a lot of power, and you have to understand how to use them to properly harness that power.  She taught me to love words and research.  (Your words are only as good as the knowledge behind them.)  I never doubted my ability to learn and to communicate effectively with her guidance.  This spurred me on to pursue a degree in communication.  

Maybe it's all the hours and money I spent learning about communication, maybe it's the SJ detail oriented part of me, or most likely a combination of the two but I find communication absolutely vital.   Clear and effective communication is necessary in every aspect of life.  You must communicate to have healthy personal relationships.  If businesses plan to succeed effective communication with employees and customers is crucial.  This is true no matter what industry (the church world is no exception).

My greatest headaches over the last two - three weeks have all stemmed from a lack of communication.  In December our house was broken into and several things were stolen.  I promptly filed all the reports and jumped through all of the hoops that the insurance company asked for to settle the claim.  It was supposed to take 2-3 days for an adjuster to contact me.  After two weeks I called to inquire about why this hadn't happened yet.  Several days later I was contacted.  I had already done everything the adjuster asked about.  Several weeks went by again with no communication and I started contacting them again.  It took several days and calls and emails to several different people to get the adjuster to contact me.  His response, "I have been out of the office."  It's been several more weeks and again no communication.  I am no closer to having this claim settled than I was in December.  And, yes I did pull the "my child is waiting for open heart surgery and I don't need this hanging over me" card.  It did not help.  

In case you are not aware, there is such a thing as an away response on your email.  I get them all them time from other people that say they are away and when to expect a reply or who to contact in the interim.  It is also quite easy to change your voicemail to communicate this information.  Well, Nationwide you have lost this customer.  As soon as this claim is settled we will be dropping your coverage.  We will be dropping our local agent as well due to communication issues.  

In late January, Reese started at a new karate school.  Because of all the wonderful things I had heard in the past about this school I was excited for him to try it out.  We've been there about six weeks now and there has been no consistency with the instructors (a different one a least once a week) and no consistency with the classes.  Last month we showed up for class and the doors were locked and no lights on.  It was a school holiday so I assumed that I missed a memo that they don't have class when there is no school.  Apparently, that isn't the case because they haven't been closed on the holidays since that one.  Last week I drove the 25 minutes (one way) to the karate school both days to find it locked and lights off.  We pay $100 a month for the classes.  They can figure out a way to notify me that there is no class.  Ironically, both times last week I intended to tell them to stop the bank draft because we would not be returning. The company they use for the bank draft won't return my phone calls either.

As if that wasn't frustrating enough, we are still waiting for word about Brinkley's upcoming surgery.  If you have missed that information, his pacemaker is damaged and has to be replaced.  We discovered this in early February but learned that the damage actually occurred in December.  At that time we were given an appointment two weeks out for preliminary tests with surgery to follow later in the week.  Due to Brinkley getting sick the preliminary work was done but the surgery was postponed.  They didn't communicate this to me and I never saw or spoke to a member of the cardiology staff.  After debating if I need to continue to stay in the area of the hospital (3 hours from home) or return to my family I called to find out what the plan was.  At that time I was told the surgery would be postponed two weeks and they would call me to schedule.  The following week we saw our local cardiologist and he didn't know much more than I did so he made a call and put the MUSC doctor on speaker phone.  I was then told surgery would be 6-8 weeks out and they would have a conference about Brinkley later that week.  

On Tuesday of this week, our Greenville doctor called to check in with us.  He made a few calls and called me back later in the day to tell me that the conference didn't happen until Monday and that they needed to clarify something with the surgeon before scheduling.  He was told they would contact me Wednesday or Thursday.  (He is currently out of town.  Imagine that, he told me he would be away and who to contact if I needed something.)   When I hadn't heard anything midday Thursday I started making phone calls to MUSC.  It's Saturday and none of those calls have been returned.  

I am a little more than disappointed with the lack of communication.  At this point my son's tiny heart is not working properly, he is in need of surgery and you can see the effects in his color, oxygen saturations, and his energy level.  If they drag this out until next month we will be pushing the six-month mark since his heart worked properly.  That can not be a good thing.  

Before I step off my crate and return it to the scrap pile let me urge you to communicate.  You can never over communicate!  A simple email or phone call is often the difference between a customer/friend for life and a huge disaster and disappointment.  People deserve to know where they stand (especially if their health or money is involved).  As the service provider, you owe your customers the common courtesy of acknowledging them and your attempts to serve them.  In most cases, they have plenty of other options of providers.  It should be considered an honor that they trusted you enough to choose you.  They are going to be your best advertisement either way.  Good or bad, it's your choice.  Choose wisely!  

Expect the Unexpected

If I have learned anything over the last four years on this journey with Brinkley it's 1) to trust my instincts and 2) expect the unexpected.  

That came in handy today.  Brinkley has been fighting off some type of respiratory crud so I have been checking his oxygen levels regularly (as I typically do during cold and flu season).  Our pulse oximeter no only measures his oxygen levels, it also measures heart rate.  Ideally, Brinkley's oxygen level is somewhere between 98 and 100.  Because of the settings on his pacemaker, his heart rate is usually around 100.  This morning his oxygen was in that ideal range but I noticed that his heart rate was erratic jumping around from the 70's to 130.  

My instincts kicked in and I went through a few steps and contacted his pacemaker specialist in Charleston.  After several calls from various people on her staff I got a call from her main nurse about 12:30.  The nurse said that the cardiologist's office is Greenville was expecting us at 1:00 and told me what they planned to do.  At this point, I knew something was truly wrong.  I told her that I would have to get him from school and couldn't do it by 1:00 but we were on our way.  I soon got a call from Dr. Raunikar, our local cardiologist who was on his way to the airport.  Again, a sign that I was not simply overly concerned.  

After arriving at the office and following the instructions that I was given, we were told that one of the leads of Brinkley's pacemaker is broken.  As a matter of fact, it has been broken since December 9th.  Several more phone calls transpired between various staff and our MUSC doctor and myself and the MUSC doctor.  

The bottom line is that we will be checking into MUSC on Monday, February 20th for open heart surgery number 3 to replace the pacemaker lead and the battery.  There is potential that more may be done but we won't know for sure until some preliminary work is done on the 20th.  Surgery will be later that week.  Please pray for us as we work over the next week to work out all the logistics.  This was definitely not on the radar.  Expect the unexpected.

As you can imagine, this has been a bit overwhelming to say the least.  Earlier in the day I was a mess.  The tears were flowing and the prayers were being lifted.  The Lord has been so faithful to us through each step of Brinkley's journey and I know He isn't finished.  I prayed that I would remember that in spite of the fear that may creep in.  We stopped at a light just a couple of blocks from the doctor's office and the song Overwhelmed by Big Daddy Weave came on.  The tears quickly began to flow again as I heard Brinkley singing along and I listened closely to the words.  It was just the reminder that I needed.   Each time his little voice sang "overwhelmed, overwhelmed by you" I became a little more overwhelmed not by my circumstances, but by His continued faithfulness.  

I'll continue to be overwhelmed and expect the unexpected.  

Report Card Day

Yesterday was report card day.  Report cards are supposed to be a mark of how much a student has learned.  Sometimes those marks make us feel accomplished and sometimes those marks make us feel ashamed.  As a child, I was pushed to be a good student and to show how smart I was by making high grades. I've come to realize that being smart means a lot more than numbers on a report card. 

School was fairly easy for me.  Reading was a skill that I learned early (before kindergarten) and writing came easy.  I could pay attention in class, take notes, and walk away with decent grades with little effort (with the exception of math).  Reese also loves school.  His favorite things about school are science, art, and social studies (as in the study of being social).  Reading has been a struggle for him.  At this point, he doesn't know that he is significantly behind in this skill.  He loves books and enjoys me reading with him.  I am careful about the books that we get and how we read them so that he doesn't get discouraged.  

I have no intention of telling him that he is behind.  I will continue my fight to get to the root of his struggle.  I will continue to read with him and encourage him to find books about things that he loves.  I will continue to be amazed at him.

Today he asked me for $1 from his spending bank for the school bookstore.  On Tuesdays and Thursdays, the school opens the bookstore and all books are $1.  He had a lego book in mind to purchase.  These books are usually a good level for him and he can read them on his own easily.  You can imagine my surprise when this is what he came home with instead: 

He was so proud to show me his purchase.  We enjoy watching the Narnia movies together and I had been considering buying the book set for him.  He opened the book and read the first page to me as soon as we got out of the school parking lot.  It was tough and took him quite a while but he did it.  He asked if he could rewatch the movie to help him understand the names.  I agreed and after homework was finished I helped him start the movie.  

I am so glad that he doesn't know that the numbers and letters on that piece of paper supposedly show how smart he is and somehow magically give him worth (or make him feel worthless).  I know that he is so much more than a number or letter and I will continue to make sure that he knows that as well.  Reading and writing may never be easy for him but so many other things are.  It's my job to help him find those things and nurture those things.  He will always be more than a just a report card.

***I am currently listening to an audio version of the book 8 Great Smarts by Kathy Koch, Phd.  It is great for helping you to discover and understand the ways that your kids are smart and how to nurture those areas.  I encourage you to take a look at the book or listen to interviews with Dr. Koch.  http://www.8greatsmarts.com/