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)!

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.  

Here's where we stand

It's been a long time coming, but I've got great things to report about my boys.  

Let's start with Reese.  

First off, I covet your prayers as we have ventured into unknown territory.  This week Reese will start seeing a new developmental/behavioral specialist and in June we will be adding another doctor to the mix.  Our hope is that the additional doctor will help manage his anxiety and OCD, as well as, help us determine if he also has a learning disability.  

He will finish first grade next week and has done really well with Math, Science, Social Studies, and Related Arts.  Reading and Writing are tougher for him, but he has made great progress in reading.  He has made other improvements at school with the help and encouragement of his teacher (Mrs. Wigington), his guidance counselor (Ms. Lee), and his assistant principal (Mr. E).  They have gone above and beyond with him and he loves school.  Today he met his new teacher and classmates for second grade.  We will start praying now as she has big shoes to fill!  Reese LOVES Mrs. Wigington, and I think the feeling is mutual.  No, I know it is!  She has been such a blessing to him and us.  

This winter he played basketball in the local rec league.  His 6 & under team included several children that he goes to school with.  They were the league champions!  In April, he started archery lessons and he is doing VERY well.  His instructor has been great with him and he loves the lessons.  This summer we are looking into karate as well.  

Now for Brinkley

This kid never ceases to amaze me.  We've had a few ear infections and sinus and allergy issues lately, but otherwise his health is great!  Thank the Lord for ear and sinus infections.   I know that sounds crazy, but to me these are typical kid problems and I love him being a typical kid!  Overall, Brinkley is a healthy little guy!  We're seeing Endocrinology every four months with the plan being to take him off the thyroid meds for a trial period in the next couple of years.  For now his thyroid is well managed.  Since we continue to be free from any neurological problems, neurology is only seeing us twice a year.  Developmental Peds and Genetics only need to see us once a year.  Due to the severity of his sleep apnea, we continue to see sleep medicine every three to four months.  

Brinkley's eye doctor only needs to see him once a year.  We continue to see the ENT every three to four months to keep a check on the tube in one ear and to determine when we can attempt to put a tube in the other ear.  The GI is seeing us twice a year, as is the nutritionist.  Last week we saw Dr. Raunikar, our cardiologist, and got the best news yet.  We only have to see him once a year now.  The cardiologist that manages his pacemaker has also given us clearance to only see her once a year.  We send electronic transmissions every three months.  As of last week, we still have three years of battery left on his pacemaker.  

As for therapy, Brinkley is consistently walking with his walker.  After months (literally 4-6 months) of fighting insurance to get him a walker of his own, we finally got it last week.  He is making a lot of progress with his speech and his vocabulary is growing every day.  Occupational therapy is also going well.  We were able to get his braces cut down this month, so now they only come up to his ankles.  

Our biggest surprise has been that he has grown 1 inch and nearly 3 pounds in the last 5 weeks!  (He's up to 23 pounds and 30 inches.)   This is HUGE!  It generally takes months for him to gain a pound. He just may make the growth chart by his birthday.  Speaking of his birthday, next week we will meet with the preschool staff at Reese's school to officially prepare for Brinkley to enroll in the K3 program in the fall.  WHAT!!!  It's hard to imagine my tiny little guy going to school. He's ready though.  He loves playing with other kids and he enjoys sitting down and working on projects like coloring, drawing, cutting, and gluing.    

As you can see, we are doing well and appreciate your continued prayers and support!  

Weighing In On Being 2

Brinkley had his two year well check up yesterday.  Thankfully, there were no shots involved, only a finger prick.  We will be headed back soon to get flu shots though.

It was no surprise that he is in the 0.13% for weight (yes, that is less than the first percentile), weighing in at 19 lbs and 0.5 ounces.  He is small, but mighty and (dare I say it) HEALTHY!!!  

When the nurse asked what changes had been made since our last visit I had to question when our last visit was.  We had not seen the pediatrician since May.  That's right May!  No sick visits since May and that visit was a hospital follow up.  She also asked about hospital stays since our visit and there were NONE!  The g-tube closure fell in that period, but it was an outpatient procedure so it didn't count.  

Yes we have had many other doctor visits in that time frame, but all of them were routine visits.  There was one potential sick visit to Pulmonolgy in June, but he was simply having seasonal allergies so he wasn't technically sick.  

Wow!  God is good and our little guy is making progress everyday!

Our week ahead

We've got a lot going on this week.  Check out this post from the Team Brinkley site for details:  


Team Brinkley: The week ahead

Never Once

Have you ever heard a song for the hundredth time and for some reason it just strikes you differently this time?  Yeah, me too (at least I hope I'm not the only one)!  Monday I was driving the boys to a doctors appointment and a song came on the radio that we have sung in church quite a few times.  I've even heard it on the radio a lot, but for some reason it just resonated with me in a new way.  Here it is:

Standing on this mountain top
Looking just how far we've come
Knowing that for every step 
You were with us
Kneeling on this battleground
Seeing just how much You've done

Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Standing on this mountain top
Looking just how far we've come
Knowing that for every step
You were with us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
It's true, You are faithful, God You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

We know, You are faithful, God, You are faithful 

This song was published in 2011, but it seems like the songwriter has been walking through the last two years of my life with me.  With all of the uncertainty of this period, one thing was certain.  We NEVER walked alone.  At times we weren't even doing the walking, we were being carried.  

We were never promised an easy road, but we were promised to have a hand to hold (or to carry us as the case may be) along the way.   The Lord has proven himself faithful over and over again in my life and our journey with Brinkley's health has been no exception. How blessed I am to serve a faithful Father.  The story has not always played out the way that I may have chosen, but it has played out in such a way that all glory and honor are His; as it should be.

I am standing on His promise of faithfulness as we have hit a road block this week. Currently we are waiting out the healing process with Brinkley's g tube.   This is a very minor issue, but it is causing Brinkley a lot of pain and stress, which in turn causes this mommy stress.  After removing his tube last week, the site is not healing properly on its own and is going to require our surgeon to intervene.  Brinkley will be having a minor surgery for the repair.  This would typically be an outpatient procedure, but due to his history he will stay overnight for observation.  

The stressful part is that our surgeon is currently away. He will not be back and in the OR until June 23rd.  Brinkley is on his schedule for that day.  We have a wonderful surgeon and would feel more comfortable waiting for him to do the surgery rather than one of his partners, if we can hold out.  Please pray that we can keep Brinkley comfortable while we wait and that I will have the wisdom to know if the time comes for another doctor to intervene.

We know that we are not alone in this and that the Lord will hold us in His perfect peace while we wait.  

And the verdict is...

The boys made the long anticipated visit to Dr Markowitz this morning.  He agreed that Reese's symptoms could go along with Celiac's Disease and sent us for lab work.  We should have that back in a week or two and will make a plan then.  As frustrating as specialty diets can be, it would be a blessing to have an answer for all of the issues that we have been having with Reese.  A plan (no matter how frustrating) is better than no plan.  For the first two years of life Reese was on a milk free diet, so these things are no stranger to us and we can make it work.

As for Brinkley, I was quite impressed to see that he was 18 pounds and 5 1/4 ounces.  Dr Markowitz was pleased with his weight gain (finally!) and said that he is approaching the 10th percentile on the Down Syndrome chart.  WOW!  Who would have ever thought that would be music to a mom's ears.  This little guy has struggled to get to the 1st and 2nd percentiles.  

I was proud to tell Dr Markowitz that Brinkley has been eating well.  Yes, he has even been spoon feeding!  There were no signs of re flux after a few months of no meds and the new formula that he is on has done away with the stomach upset we had been seeing.

   
Next came the million dollar question.... When can the tube come out?  To my surprise the answer was, "now"!  Not as in, "call Dr Gates and make an appointment for him to remove it", but as in "take it out at home, cover it with gauze for a couple of days."  He said that it will leak for 24 -48 hours then all should be well.  If it has not closed completely or is still leaking then we'll call Dr Gates, our peds surgeon, to have him stitch it up.  

As a precaution I have put in a call to Dr Gates office.  His nurse Kim is incredibly helpful and will give me the pep talk I need to feel confident in handling this myself.  

On top of that, Dr Markowitz said that there is not really any reason that he needs to see us again.  What?  Did I hear that correctly?  Is a doctor releasing us from care?  Am I really only getting good news from this visit?

I have to admit that when he offered us an appointment in six months I couldn't turn it down.  Since Brinkley is just starting to eat solids I would like to be on the patient list in case we run in to any allergy issues.  So, this proved to be a great visit!  Thanks for praying for us!  Aside from his pacemaker, Brinkley will no longer be considered medically complex now!  How's that for making progress?!