Monday, May 13, 2013

Tears and smiles

Overwhelmed, last night I left the hospital with tears in my eyes.  

Yes, you read that right.  We are back in the hospital.  Saturday night Brinkley threw up a few times and then started having very loose bowel movements.  He was restless all night and seemed to have a fever.  Sunday morning I checked his temperature to see that he had a fever and his breathing had become very labored.  We hurried to the ER to find that his fever was worse (102) and his breathing even more erratic.  Dr Polley did some lab work and decided that we are dealing with a stomach virus.  

Mary Beth was the RT on duty for both the ER and PICU yesterday and she promptly told the PICU team that we were back.  Nurse Anne was soon by our ER bedside and let us know that the ladies upstairs were already discussing who got to have Brinkley this time.  Soon we were wheeled upstairs and found several of the precious nurses waiting to greet us.  Our day was full of visitors.  One nurse after another came in to visit us, as well as a couple of the residents that have been so good to us.  

After our experience at MUSC the last couple of weeks, I was reminded just how blessed we are to have this wonderful, loving, team taking care of our sweet baby boy.  The nurses and doctors came in and hugged me and many of them reminded me that they were continuing to pray for our family.  All along this journey my prayer has been for wisdom and peace as we build the team caring for Brinkley.  Last night I was reminded and overwhelmed by how faithful the Lord has been to answer those prayers.  

As the attending doctor just came into our room, he said, "we have to stop meeting like this."  He then commented that he didn't know why I was smiling, he wouldn't be if he were in my shoes.   All I can say is that these shoes are firmly planted in the knowledge that the Lord has a purpose for all of this.  As in everything else in this life, He has promised that since He brought me to it He will lead me through it.  I'm determined to make the best of this and take advantage of every moment that I have here to love my baby and show love and appreciation to the staff here.  It's not always smiles.  As a matter of fact, there are many tears.  However, those tears last night were tears of joy.  I was simply overwhelmed at the goodness of my God.  

Wednesday, May 8, 2013


Yesterday Brinkley had an EGD and a Bronchoscopy.  Both the GI and Pulmonologist took biopsies of the areas that they looked at.  It will take a few days to get the results back from those, but we expect to have them tomorrow or Friday.  So, in the meantime, we wait.

The GI, Dr. Carter-Kent, found two ulcers in his small intestine.  She said that these are most likely caused by reflux.  The biopsy of the tissue around it will determine more about the source.  The biopsy of the lungs will help to determine if he has been accumulating formula or secretions in his lungs.  

He had an "episode" during one of his feedings with the nurses.  His breathing became erratic and his 02 levels began fluctuating.   She alerted the attending doctors and they are beginning to see what keeps happening at home that is sending us to the ER.  I hate that this is happening to him, but I am glad that the nurses have seen it since it is often hard to describe very well.  This afternoon, however, he ate well!  He couldn't get enough and would have finished the whole feed by mouth, but he fell asleep.

We will continue to wait for the biopsy results.  The GI and Pulmonologist will then work with us to make a plan for how to proceed from here.  If a procedure is necessary, we will schedule that and return home until then.  I am looking forward to being home soon and having all of my boys in one place.  I am really missing Bryan and Reese.  Thankfully when we return home we will have in home nursing.  If it works out well, it will be a HUGE blessing and will allow me some time to focus on Reese and tackling his current issues.  

Reese has been referred to a program for the summer that will help us keep him in a structured setting until school starts.  We are hoping that it will work out and that it will be something that we can do financially.  

In the midst of this hospital stay my little wonder has hit a couple of milestones: 1. He is grabbing onto his feet and ankles and waving them.  2. He's 8 months old!

Somebody is happy about being 8 months!

Here's a little sweetness to leave you with:

Sunday, May 5, 2013

Fools give full vent

Bryan and I often disagree on the way to approach situations.  He is quite emotional and wants to jump on things immediately.  I, on the other hand, like to mull things over in my mind and formulate a plan.  I like to make sure that everything, including the timing, is thought through.  With that in mind these two scriptures kept coming to my mind today:

A gentle answer will calm a person’s anger,
   but an unkind answer will cause more anger.
Proverbs 15:1

Foolish people lose their tempers,
    but wise people control theirs.
Proverbs 29:11

In the NIV Proverbs 29 reads, "Fools give full vent to their anger."  Anger has been a recurring theme for me over the last four days.  I have had to remember these wise words and heed them.  

Monday we were sent here to MUSC to further pursue Brinkley's respiratory issues.  Thursday, despite my pleas otherwise, we were discharged.  We were discharged with no further information, with no new tests or procedures.  We did not see the specialists that I asked for.  We didn't get the care that I felt Brinkley deserved and I wasn't heard when I pleaded for help.  

I was so irate that I lost it and cried as I was pleading with the attending doctor to hear me out and not send us home.  Not knowing where else to turn I called Dr Raunikar for advice and help.  The doctors here did not appreciate that I called him and did not want to wait for me to speak to him before sending us home.  

Word spread quickly through the GHS PICU about our situation and soon my phone was buzzing.  The incredible staff were doing their best to try to help me and point me in the right direction to get Brinkley the help he needs.  I can not tell you how big a blessing the doctors and nurses there have been to us.  I know that they love my boy.  

I told the attending doctor that I was not leaving town because Brinkley would flair up again and we need help.  Just as I suspected, around 5 am Friday morning he woke up gagging on his formula.  He soon started breathing erratically and his 02 numbers got low.  I took him to the ER at MUSC and told the ER doctor everything that had happened.  He was WONDERFUL, incredibly helpful and caring.  

We were readmitted and placed with the same group of doctors.  I was a bit disheartened and concerned about how much progress we would make.  Things quickly started going downhill again.  Fortunately, a Pulmonologist came in that was great and refused to back down to the attending doctor.  She had Brinkley in for a CT scan of the chest within a couple of hours.  More issues arose with the intern and my anger levels increased.  Saturday the Pulmonologist came back and told me the scan showed that both of Brinkley's lung were partially collapsed.  (This created even more anger for the lack of care the attending doctor and intern were giving us.)  Later in the afternoon I finally got the GI consult that I had been begging for.  The ER doctor and the Pulmonologist both agreed that we needed it and requested it for us.  (Somehow it didn't seem important to the attending doctor to call in a GI when we are dealing with reflux aspiration.)  Both of these specialists were wonderful and very helpful.  These two doctors wanted to do the scopes that GHS had suggested.  We will start these scopes tomorrow and should have some information on Wednesday or Thursday.  

In the process of all of this happening I was conferring with a friend who is familiar with the way the hospital works and asking for the proper channels to voice my concerns to.  As the friend suggested I tried to start with the nurses but that didn't go quite the way expected.  Things got further out of control with the intern and I could not deal with any more.  I had remained quite calm and composed, but was not willing to deal with it anymore.  This morning I came for rounds and then headed out to speak to a supervisor.  I was able to speak to the Children's Hospital Supervisor and she was very helpful and understanding.  The doctor and intern will no longer be treating Brinkley or dealing with our family.  

There is much more to the story that I will spare you for the sake of time, but things were horrible.  I truly feel like I have been living a nightmare.  I never imagined that things could have gotten this far out of control.  This has been one of the worst experiences of my life. It would have been easy to let the frustration and anger take over, but as the scriptures above reminded me, we get a lot further when we control our tempers.  

Though Bryan and I did not completely agree about how to handle this situation, I feel like my anger and temper were under control.  I was able to peacefully talk to the proper people to have my concerns heard and addressed.  To further remind me of how to handle this situation, these two scriptures showed us as my verses of the day: 

Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus. Philippians 4:6-7 HCSB

Do your best to present yourself to God as one approved, a worker who does not need to be ashamed and who correctly handles the word of truth.  2 Timothy 2:15

Wednesday, May 1, 2013

Providence is an incredible thing

Here I am again, looking at the all too familiar walls of the Children's Hospital at MUSC.  Last night I realized how ironic it is for us to be here looking for answers.  Last May we did the very same thing.  I will never forget the excitement as we rolled into Dr Frederick's office for our 20 week ultrasound.  We couldn't wait to find out if our little blessing was a boy or a girl.  What we didn't expect was to leave the ultrasound room and sit down in the exam room to be told that some concerns had arisen from the ultrasound.  Something appeared abnormal with the heart and the thickness of the neck seemed abnormal.

Dr Frederick told us that this could be nothing, but it could also be a sign of a problem with the baby.  She recommended that we go back and do the testing that we had opted out of previously that would show us our risk for things such as Downs.  The ultrasound tech had also recommended another ultrasound at Maternal Fetal Medicine where the scan could be more precise.  Dr Frederick told me that the lab work should be back in a week and not to worry.  An appointment was made at MFM.  

When I received a call from Dr Frederick personally only two days later I knew something wasn't right.  Bryan and I stood by the phone in his office with her on the speaker phone to hear her tell us that the lab work showed we were at a much higher risk of downs than normal.  She spent 30 or more minutes explaining things to us and just caring for us. At my age, a normal risk would have been 1 in 300, ours was 1 in 50.  She told us over and over again, "that's 49 chances that he doesn't have Downs."   Unlike what I have heard from many parents of children with Downs, what followed was, "don't worry, we will make sure you have every resource you need.  Downs is something that can be managed and there are many resources available to help."  Never once did she insinuate that we should consider anything besides continuing the pregnancy and preparing him to thrive in life.  

This was a lot to take in and it was followed by many fears and tears from Bryan and I both.  We kept the information to ourselves.  We wanted to know for sure and educate ourselves before anyone else knew and started questioning us.  The next week we started seeing the doctors at MFM.  Our first visit didn't show any concerns on the ultrasound, but the doctor told us that he couldn't argue with the lab work and suggested an amniocentesis.  Dr Frederick had discussed this possibility with us.  We knew there were risks, but we also needed to know.  The Lord had brought us this far and I felt certain that He was going to protect my baby through this. 

We spoke with a genetic counselor and she told us that she would get in touch with us with the results.  She gave us some general info on Downs and let us know about resources she could connect us with if he indeed had Downs.  She also mentioned in passing the option to terminate.  I felt sick to my stomach that someone would think we would even consider this.  I realize by law she had to tell us this and I appreciate the fact that she told us everything available to help us before that was even mentioned.

With all of this weighing on our hearts and minds we knew that this could very well be the last "normal" summer of our lives.  We wanted to get away with Reese and enjoy focusing on him for a while and just have fun with him.  At this point we still had not told anyone what was going on.  I desperately needed to get away and clear my head.  Where better to do that than my favorite beach, Isle of Palms.  A friend, who didn't have a clue what was going on in our lives, had reserved a house in IOP for her family and was not going to be able  come.  She offered us the house for a week and off we were.

To us this was a place to come for time to focus on our family, seek the Lord for answers, and clear our heads.  In God's providence, that was a pattern we had no idea He was setting for us.  Just like our December and February stays, we are here in Charleston again for answers and I am clearing my head with plenty of time to focus on the Lord.  

My first trip here was in August of 2001 when Bryan and I arrived on IOP for our honeymoon.  Who would have ever guessed what a significant role this place would continue to play in our lives.  It's amazing to see how God weaves things into our lives.  Things that can seem so insignificant become so amazing when you look back at His providential hand.  

I'm praying that this stay brings us the answers we need just like it has so many times before.  God is faithful and I trust that He is going to provide.  After typing all of this, I just read the verse of the day that was emailed to me and yet again, the Lord provides:

And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. Hebrews 11:6 NIV

Join me in earnestly seeking Him for Brinkley's answer!