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.

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.  

Stones of Rememberance

In the Old Testament God often instructed people to leave visual reminders when He had done something significant in their lives.  In Joshua 4 he had the Israelites leave stones at the Jordan River.  Verse 6 says, "They will be a sign among you. In the future your children will ask you, ‘What do these rocks mean?’" These stones of remembrance were intended to not only remind them but to also remind those that came after them.  

These days the Lord may not tell us to literally leave stones of remembrance but He does give us visual reminders of His faithfulness.  Today Facebook served as one of those reminders to me.  As I was looking at my memories I found this: 

A flood of emotions came over me as I thought about that day.  As if a complicated pregnancy, early emergency c-section, a complicated prenatal diagnosis, and seven weeks in the NICU weren't enough Brinkley decided to surprise us with the need for emergency open heart surgery at eleven weeks old.  There was so much that happened over the next five weeks that would test my faith and prove to me over and over again just how faithful my Lord really is.  (You can find many of my thoughts about that here on the blog in the December 2012 section.)

It was what I saw that I had posted a few hours earlier that day that brought me to tears. Over the last four years, I have thought about that day many times and have reread these statuses many times but it wasn't until today that I noticed this: 

  

I often listen to James McDonald's teaching on the radio and must have been that morning.  This status was followed by a picture taken at Reese's preschool Christmas program rehearsal and a check-in at the cardiologist's office.  

I am certain that I had no idea how significant this thought would become in my life.  I have heard that thought many times.  Sometimes it is worded a little differently, but the sentiment is always the same.  The tears flowed as I thought of all the ways that Brinkley's unexpected journey has been used so far.  To think of how much my life has changed (for the better) is almost overwhelming.  The faithfulness of the Lord never ceases to amaze me. 

While I may have Facebook memories to serve as stones of remembrance for me, Brinkley has the permanent visible scars.  His trunk may be covered in marks and scars but each one is a story.  A story of the faithfulness of my Lord.  A story of the power of prayer.  A story of strength and determination.  A story that will one day be his to share in his own words.  For the time being, I'll continue to share every chance I have.  I'll continue to walk through each door that is opened to walk with other families through their journey. I'll continue to share the tiny bundle of joy and blessing that I am blessed to have call me momma.  I'll continue to share until the day comes that he asks about his "stones of remembrance" and in turn shares on his own.

Showing Some Tubie Love

Not only is this week CHD Awareness Week, it is also Feeding Tube Awareness Week.  Due to Brinkley's CHD he also required a feeding tube.  It is not uncommon for children with CHD's to require feeding tubes due to the fact that they become breathless trying to coordinate the suck, swallow, breathe cycle that is required during feeding.  Generally these children will start with an NG tube or something similar.  This is a nasogastric tube and is inserted through the nose (hence naso) down into the stomach (gastric).  

The NG tube is often times temporary.  After some time, it was determined that Brinkley would benefit from a G-tube since it was becoming obvious that his feeding issues were not going to be resolved quickly.  I was devastated by the news that my 5 week old baby was going to undergo surgery for the tube to be placed.  I was scared to death and thought that it would be so difficult to care for and manage a tube.  Thankfully, nurse Kim who often took care of Brinkley on weekends was the pediatric surgeon's primary nurse during the week.  She was a wealth of knowledge about feeding tubes and walked me through the process and even brought in samples to show me what it would look like and how I would care for it at home.  This eased my mind a little and I realized that agreeing to the surgery may very well be the only way that Brinkley was going to be discharged from the NICU anytime soon.  On October 11, 2012 my tiny little guy underwent his first surgery to have his g-tube placed.  

Surgically placed tubes are usually either G-tubes or GJ-tubes.  A Gastrostromy tube (G-Tube) is placed in the lower left abdomen and goes directly into the stomach.  The Gastro-jujunum tube (GJ tube) is also placed in the lower left abdomen through the stomach but passes through the stomach and empties into the jujunum (small intestine) bypassing the stomach.  Brinkley's initial tube was long and was not removable from the skin.  









 You can't see it in these pictures, but the long tube had a port on the end that you would connect to the tube coming from the pump.  All meds and food/formula were put through the tube.  A few days before our NICU discharge a home health nurse came and trained us on using the type of pump that we would be taking home.  Not being good with math, I was a little intimidated by the "formulas" for figuring out the settings to program into the pump.  Fortunately, our NICU nurses gave me plenty of help.  I also learned really quickly that I could make the pump work a lot better for us by simply reading the instruction manual and learning about features that the home health nurse never told us about.  I also got quite good at figuring out how to "hide" the long part of the tube in his clothes.

I don't remember exactly how long it was, but after a few months (about 3 months) the long tube was removed and a button was put in its place.  The button is more flush to the skin and does not have the tube hanging from it.  It makes dressing much easier and it has to be more comfortable for the patient.    With the button, you put a connector into the button and then connect the pump to that, or push the meds through the connector.  

The button can be irritating to the skin, so many doctors recommend buffering it from the skin.  I have chosen to do this with tube pads.  There are several places that you can order them from and they can be plain or super cute.  Of course, I have opted for the super cute ones!  My thought is that if you need the tube, you might as well accessorize it.  (Especially since I don't have any girls to buy accessories for.)  

These are just a few of the button covers that we have for Brinkley.

When Brinkley's tube was placed I really wished that I had a visual to get a better idea of what to expect.  With this in mind Bryan and I have taken a few photos and made a short (very basic, nothing fancy) video about using the tube.  Before following the steps on the video, you will need to collect your needed items (connector, meds, syringes, feedingbag, etc.)

 
These are the items that we need on a nightly basis for Brinkley.  You'll see his meds and their respective syringes, a connector, sterile water, and a syringe for the sterile water. I've included a close up of the connector.  I would recommend that you ask for connectors that have med ports.  This means that there is a large opening and a small opening on the end of the connector.

Here is our attempt to walk you through the steps of using the tube.  The best part is the super cute model that we used!

I truly hope that this is helpful for someone and that it helps to ease your nerves about having to use a tube.  It is not at all like I had thought and honestly isn't that big of a deal.  The worst part was figuring out how to hide the long tube in his clothes and being careful not to catch it on anything.  Buttons do have to be changed out periodically.  Brinkley is on a 3 month schedule and they occasionally do malfunction or pull out.  I have had to learn to replace it on my own.  This was a TERRIFYING thought to me, but Nurse Kim made sure that I was more than prepared and now I do it like a champ in less than 2 or 3 minutes.  

I hope that you don't ever need to know how to do this, but if you do or if someone you know does, please pass this on.  Feel free to contact me if I can help with more info or more photos.  My experience isn't worth much if I don't share it to help someone else!

Happy "New" Heart Day Brinkley!

If you follow me on Facebook or Instagram you may have noticed that this week is Congenital Heart Defect Awareness week.  I have been posting facts about CHD's each day for the last two weeks.  CHD is something that affects our family very closely.  As a matter of fact this week happens to be the anniversary of Brinkley's second open heart surgery.  

Last year at almost this exact time, this is where I found myself and my 5 month old son.  At 1:15 on 2/13/13 we had an appointment with pulmonology for Brinkley to receive his RSV vaccine.  The days leading up to this appointment his 02 sats had been fluctuating greatly.  The same happened in the pulmonology office as well as a heart rate in the 40's.  We were scheduled to leave pulmonology and go downstairs for a routine echo in our cardiology office.  It became quite clear that the Pulmonologist was very concerned with Brinkley's vitals and he called the cardiology office and insisted that we needed to be seen by the doctor rather than just the tech doing the echo.  Our doctor was not in the office and the only one on hand had never dealt with us before.  

We proceeded downstairs to be quickly met by Dr Lucas and even more quickly swept away to the echo room.  This echo was quite short and was followed by a conversation with the doctor that we would be heading straight to the PICU and should expect to be flown to MUSC before the end of the day.  Brinkley had gone into complete heart block and needed immediate surgery.  I'm not sure that I realized how serious the situation was at the time.  Complete heart block means that the top and bottom chambers of the heart are not working together and it is not uncommon for this to be fatal.  

We spent about 12 hours in the PICU at GHS while waiting for a flight to MUSC.  About 4am we were airlifted to MUSC and within a few hours Brinkley was taken back for his second OHS.  This time his initial TOF repair was revised and a pacemaker was placed.  If you are thinking about the dates, Brinkley's "new" heart was placed on Valentine's Day.

Let me just say what a difference a year makes!  Today Brinkley is missing therapy due to a snowstorm, but he would normally be amazing us all on Thursday morning with his attempts to walk and crawl and his awesome progress in OT.  Right now he is crawling around the playroom eating every toy he can get his hands on.  It's hard to believe that the fragile little guy in the picture above is the feisty, wild man that we live with today.  He is so full of life and we have an amazing team of doctors and therapists to thank for helping us get to this point.  

I know at least three other local moms that have had to leave their babies in the hands of the MUSC team over the last couple of weeks.  I write this to hopefully encourage you and to let you know that I've been there too.  Those moments and days can be so overwhelming and down right terrifying.  We prayed (and continue to) that God would give us just the right team to help Brinkley and He was faithful.  It has not been an easy road and there have been many set backs, but God is good and we see His hand in Brinkley's life everyday.  

Many people ask about Brinkley's scars and I wondered about scars as well when we started this journey.  I just noticed last night how well he has healed and I wanted to share it as encouragement as well.  

This is the scar following the second surgery.

Scar as of 2/13/14