Sunday, October 27, 2013

A purpose for it all

As frustrating as all of these hospital stays can be, I am always amazed at the opportunities that arise in the process.  Thursday night while we were in the ER the nurses asked me about our family.  After telling them about Reese the male nurse (whom we have become quite familiar with) came back and asked if he could ask me some personal questions.  What followed was a lot of questions and discussion about Reese's adoption.  This seems to come up a lot when we are here.  So many people are curious about the process and say that they have thought about adopting.  As they would say at Chick-fil-A, it's my pleasure to share about my Reesey and encourage others to get involved with these awesome kids!

Friday morning when the team made rounds we were so encouraged!  I asked the attending doctor if we needed to notify cardiology that he had been admitted.  He told us that everything looked great with his heart and they were not concerned that this was affecting the heart.  I told him that Dr Raunikar tends to be overly cautious about Brinkley and we would like to at least have him notified even if it wasn't necessary to be seen.  His response was, "Austin Raunikar is an amazing doctor.  It has been my goal to strive to be the kind of doctor that he is."  I nearly cried (and I'm tearing up typing this). 

If you've followed Brinkley's story from the beginning, you know our prayer was never that God would take away Brinkley's conditions, but that He would grant us wisdom in choosing his medical team.  This doctors comments about Dr Raunikar were just further confirmation to us that God has been faithful to honor that prayer.  

As if those two incidents weren't enough to make this stay seem purposeful, after the team left one of the doctors returned.  He asked if he could ask us some personal questions.  His  wife is expecting their first child (she's 36 and he's 51) and is at high risk for Downs.  He asked us a lot of questions about our prenatal journey as well as how things are now.  Again, it was my pleasure to share about our precious Brinkley and to educate someone about DS.  After talking for a few minutes, he shared his story with us and it was so interesting.  He and his wife are both from Iraq.  It was an honor to be able to share with him and I was so impressed that he asked.  

It was kind of ironic that this happened when it did.  GHS is the home of the USC school of medicine in Greenville. One of their programs that I was excited to find out about is one where they send pediatric medical students into the homes of special needs families to observe and learn what life is like at home.  This rotation we are the family that they will be observing, so this doctor's questions were preparing us for the students.  

To bring it all home, my devotion this morning was about blind Bartimaeus.  He approached Jesus and asked him to give him sight.  Jesus responded that his faith had made him whole.  It wasn't his intellect, his money, or his works, but his faith that healed him.  He is an example that faith is all it takes.  It is my job to keep the faith on this journey and to know that He is faithful to answer my prayers and embrace every opportunity that presents itself to me.  He has proven faithful in my prayers for wisdom to this point and will continue to be.  Faith that there is a purpose in this journey.  No more, no less.

Virus, RSV, Pneumonia... Back to GHS

Last Thursday (10/17) Brinkley started running a fever.  Due to the fact he is cutting teeth I was not concerned about the low fever.  However, the fever continued the next day and began to include some coughing.  Saturday the coughing got worse and so did the fever.   None of the things I have be trained to do from home were helping so we headed to the ER.  

Brinkley is really hard to stick due to being stuck so many times.  They were not able to get labs so we had to come back on Sunday for a recheck.  The consensus was that he had a respiratory virus.  

Monday we were scheduled to see Peds Surgery for his regular check on his g-tube.  Our nurse there was also one of our NICU nurses and she has always been very attached to Brinkley.  I told her that I had called pulmonology earlier in the morning to see if they wanted to see Brinkley.  She decided that I was not going to wait for a call back and she called them herself and made arrangements for them to see us immediately.

Our regular nurse at pulmonology (surprise, surprise, she loves Brinkley) came in and took over from the tech that was helping us.  She quickly got his vitals and put us in a room.  Lisa, our NP, checked him out and felt certain that he had RSV.  She tested him and gave us an RSV treatment plan.  Ironically, the RSV screening came back negative but she wanted us to continue the same treatment plan.  Thursday came around and Brinkley did not seem to be making any progress.  Actually, he was getting more miserable. 

That night his temperature reached 102.8 so I called Lisa.  We decided to bring him to the ER, so she called ahead and made arrangements for them to be expecting us.  We arrived around 8:30 pm and finally got admitted and moved to a room around 2 am.  I talked with the various doctors and and nurses and was able to go to bed around 3 am.  Of course, Brinkley was up for the day at 5 am.  Needless to say Friday was a long day!  

So we have been here since Thursday treating pneumonia.  Yesterday seemed to be his turn around day.  He played a good bit and got back to his regular schedule for the most part.  The team plans to send us home tomorrow.  Unfortunately, Brinkley will not be able to be at the Buddy Walk today, but we are excited to be walking for him and hope to see you there!

Tuesday, October 22, 2013

Team Brinkley Golf Tournament

Saturday, November 2nd Smithfields Country Club in Easley is hosting a golf tournament to benefit Team Brinkley.  Proceeds will assist us with Therapeutic expenses that our insurance doesn't cover, as well as, our travel expenses for visits to MUSC.  We are looking for hole sponsors ($100), silent auction items, and volunteers.  To register a team contact Adam Relan at the above number.  To sponsor a hole contact Sherry Anthony at 864-220-0632 ext 232.  To volunteer or donate to the auction you can contact Bryan or I by phone or email at

Sunday, October 20, 2013


Looks like a typical happy baby right?  Well this is so much more to us.  This picture represents a milestone for Brinkley.  If you look closely, you will notice that Brinkley's sleeper has a zipper.  Unlike most children this is the first time that my 13 month old has ever worn a zip up sleeper.  

Zippers are one of the many things I had never considered before having an extra special baby.  Up until late August Brinkley was dependent upon a feeding tube.  His button where you attach the tube is to the left of his belly button.  It would have been nearly impossible to feed him through the night in zip up pajamas.

The beauty of our journey is that we are learning to appreciate things that most families never have to think about.  We are learning to stop and notice the simple things, the small victories.  This zipper is one of those small victories.  It's one more thing to show us just how far Brinkley has come and how faithful God has been.  

Following Brinkley's last procedure in August he has no longer been dependent on oxygen or his feeding tube.  He's stronger and stronger everyday!  This weekend I've had another opportunity to see how far we've come.  The little guy now has three teeth.  They have come in one after another and just like any kid, he has been a grumpy mess.  He's had a low fever several times during this process, but this week it seemed to linger a little long for me.  

After two days of a low fever he started coughing as well.  Yesterday he was just miserable and very lethargic.  After seeing his temperature at 101.4 with Motrin and Tylenol, I decided I needed to take him to the ER.   The temp was even higher when we got there.  

When the resident came in to check on us I immediately recognized her from a previous hospital stay and she recognized us as well.  Her first statement was, "everyone in Children's Hospital loves this guy."  That was one of those good and bad things.  I hate that the little guy has been there enough that so many of them are VERY familiar with him.  On the other hand it is encouraging to know that they all care about him and want to make sure he gets the best possible care.  

There was a struggle to get lab work.  The attempts were not successful so we were told to come back this morning for a recheck.  Another resident that we met last night came to check on us as well as the attending physician.  After a through exam they agreed that he has a respiratory virus and sent us home.  What, no admission?!  Just another small victory!  A few months ago, a respiratory virus would have sent us to the PICU.  He doesn't even need extra oxygen support.  He gets stronger everyday and we couldn't be more proud of him!  

He still feels pretty crummy and has a nasty cough, so prayers are appreciated.  All in all he is ok and is keeping a smile on his face the whole time.  What a trooper!  We've got one tough and determined little guy on our hands.

Saturday, October 5, 2013

Appointments, Appointments, and more Appointments

This was appointment week for us.  Both boys and I had appointments, a total of 12 to be exact.  It was busy to say the least.  This is the first time in several months that we have had such a hectic week.  When Brinkley first came home from the NICU and from MUSC, it was not unusual for our schedule to be like this every couple of weeks.  (I'm not complaining about the slow down!)  

We started our week with a visit to pulmonology and cardiology.  I told Elora, our home health nurse, to be prepared.  We see the nurse practitioner at the pulmonology office and to say that she loves Brinkley is an understatement.  As she was opening the door to come into the room we heard her tell the medical student, "be prepared to fall in love."  Lisa, the NP, was glad to see that we had weened off the 02 and was even more impressed that when they tested him his 02 level was 100%.  (I was a little impressed too!)  We talked through the procedure that Dr White had done at MUSC in August and made our plan for the winter.  Last week they had their first confirmed case of RSV so we were given some pretty strict guidelines to go by for the next few months to protect him from RSV.  Don't be surprised if you don't see him out much.  After cold and flu season, we may start weening off some of his respiratory meds.  Overall they are pleased with his progress and think that he is doing well!

Dr Raunikar, our cardiologist, only had GREAT things to say.  Brinkley's EKG and Echo looked GREAT!  He was extremely pleased and started weening B off one of his heart meds.  Dr Raunikar will be on a mission trip to Vietnam for the next few weeks.  When he returns we will check in with him about the change of meds and go from there.  

Tuesday we had our regular therapy appointments and Reese had a sleep study.  I plan to write a post about the sleep study this week, so be on the look out for that.  Wednesday Brinkley saw Dr Markowitz, the GI, who was also pleased overall with his progress and also wants to start weening him off of meds by letting him outgrow the doses he is currently on. He had some concern about Brinkley's weight, but only wanted to watch it at this point.   We will see him again after the first of the year and hopefully remove the feeding tube!

After seeing Dr Markowitz we went to neurology for our initial visit with Dr Morales.  We had been referred to him when we were struggling with respiratory issues.  There was some concern that an underlying neuromuscular issue could be playing into the respiratory issues.  Dr Morales did a through exam and did not have any concerns.  He said that an MRI would allow him to see if there are any abnormalities that could produce problems, but due to B's pacemaker he can not have an MRI.  A CT scan is the next best option, but Dr Morales said that he does not see anything concerning enough to justify exposing him to the radiation of a CT.   He does not anticipate any problems, but because Brinkley is at higher risk for potential issues we will be seeing him again after the first of the year to check again.    

Thursday we had our regular therapy appointments and we are wrapping up our weekend with the Greenville Buddy Walk tomorrow.  We are excited about the walk and tailgating with Team Brinkley!   You still have time to join us.  The walk is tomorrow at Greenville Tech's Pleasantburg Dr Campus.  We'll be there around 1.  Hope to see you there!