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!

We're back... (The MUSC version)

Brinkley arrived at MUSC about 6:30 last night.  It was a somewhat uneventful night.  He got to have a bottle for the first time since admission to GHS on Saturday the 21st.  As you can imagine, he was quite ready for it!  He was so excited that he even held it himself for the first time.

Sorry, it's a little blurry

On top of all of his respiratory and reflux issues he is teething, so he got pretty grumpy last night.  Some cuddling and rocking calmed him down after a while until Mommy's clumsiness struck.  After finally getting him calmed down I attempted to put him back in the bed.  I didn't know it, but his feeding tube had gotten pinched between me and the bed and it pulled his button right out.  He was hysterical!  I was pretty close to that point myself and fought back tears.  The nurse promptly got the needed supplies to fix it and assured me that this happens all the time.  Unfortunately, that didn't reassure me.  I felt so bad.  He screamed and screamed for quite a while.  A bouncy chair, some music, and a little bit of a bottle eventually helped him calm down.  

We are still waiting on the team to round on him this morning so that we can get a plan.  I will try to keep to update as possible.  Here's a little sweetness to hold you over:

On the road again

After much consideration and consultation we will be headed back to MUSC tomorrow.  Wednesday Brinkley had a milk scan that did not give us any answers.  This was followed by an mii on Thursday that ran into Friday.  Due to the time that the test finished we won't have results from it until tomorrow.  Dr Avant told me on Friday morning that he did not anticipate the mii would produce any answers for us.  

The next step would be to start pulmonary testing.  After discussing this, we were told that it would involve sedation and that would send us to MUSC.  If the mii shows that reflux is the basis of our problems, the procedure to correct that (Nissen) would have to be done at MUSC due to sedation and the placement of his pacemaker.  We initially considered going to MUSC immediately, so this was the confirmation that I needed to know that it was time.  

Friday night I spoke to Dr Boyd, the resident on duty, about my concerns and that we would like to move.  I was so nervous about telling her.  That people pleasing side of me tried to take over.  Earlier in the day I talked to one of our specialists about the possibility of transferring and she said, "I can tell you feel guilty about this."  She was exactly right.  I felt terrible telling these people who have been giving my child excellent care that I needed to move on.  Dr Boyd helped put it in perspective for me.  She said that we can't keep bringing him to the hospital every other week.  It's not good for him and it exposes him to too much.  She also said that we need an answer and agreed that we may have exhausted our options here.

Dr Berning is on duty for the weekend and he was so helpful yesterday.  He was very understanding and wanted to help us do whatever we need to help Brinkley.  I am hoping to speak to him again today to get more details about how the transfer will work.  He was more than willing to let Brinkley stay in PICU for the weekend so that we did not have to move to the floor.  

When we get to MUSC they will redo many of the same tests that have already been done, but we are hoping the the timing will be better on these and he will actually have "episodes" during the testing this time.  

Yesterday he was much more himself and he laughed and played most all day.  He enjoyed Reese coming to visit.  Reese climbed into the crib with him and entertained him for long time.  It was so precious how much fun they had with each other.  I can't wait for this to be the normal at home!

Unexpected answers

I was expecting to arrive this morning and find Brinkley with the mii started. That was not the case.  Ms Kay (we love her) greeted me with some seemingly not so good news.  Brinkley's feedings had to be stopped during the night due to his 02 levels dropping. She also let me know that the mii would have to be postponed for this reason.
The doctors feel like this may be confirmation of the suspected aspiration problem. The team just started making rounds and it may be a while before they get to us. I'm very interested to see how the plan unfolds now.
We may have just the answer we needed without all the rig-a-ma-roll.  More to come...

We're still here

In case you were wondering, we have been without internet access at our house since Thursday night.  A repairman came yesterday to fix it and we are back up and running now.  Trying to type anything of length on my phone is just too frustrating, which is why you haven't heard from me in a few days. 

We are still in PICU at GHS waiting for answers to this recurring problem.  After nearly 24 hours we still had no information, so I finally just asked.  Dr Gwyn got very quiet, rubbed his head, and then looked at me and said he honestly didn't know.  I was glad to hear his honesty, but frustrated at the same time.  We've nearly four of the last six weeks in the hospital for the same thing and no one has answers.  Yesterday our gastroenterologist and pulmonoligist were both consulted and brought in to check Brinkley out.  Based on their recommendations there are three tests that we are anticipating.  

Tomorrow we will redo the mii that was done during our last stay.  Dr Markowitz gave them new parameters to do the test under, so hopefully this will help get better data this time.  If that test doesn't give us any answers then we have a milk scan lined up for Friday.  If needed we will do a bronchial scope after that.  At this point, our plan is to exhaust all options that we have available here before transferring to MUSC.  If any of these tests show that a procedure is necessary we will head to MUSC.  

We appreciate your prayers and the postcards that have been coming in.  We now have two international ones along with several different states.  I will be posting an update on Project Brinkley this week, so keep your ear out.  

Surprise surprise

Around 11:30 last night we found ourselves back at GHS.  Yet again, he is having respiratory issues.  We are becoming all too familiar with this. 

Since being discharged last Sunday his 02 saturation has continued to be low.  They have actually gotten a little worse everyday.  Yesterday we had to keep him on oxygen all day.  After his last breathing treatment he was wheezing terribly (worse than ever before). 

I was concerned and thought we should go to the hospital but didn't say anything.  Within 30 minutes Bryan said, "maybe we should take him to the hospital."  That was all I needed and within a few minutes we were out the door with feeding pump and portable 02 in hand. 

After a short visit in the er, we were moved to picu.  The sweet night shift ladies greeted us as we rolled in.  A couple of Brinkley's girlfriends came to get him settled in and talk to him.  We've become well known up here.  One of the nurses said they got a call from the er about a pacemaker baby and they immediately knew it was Brinkley. 

Dr Gwyn came in and talked with me and got the report.  I settled in for the night around 2am.  I must have been exhausted because I slept pretty well (even without ear plugs). 

This morning our PICU friend Heather is our nurse.  She is taking good care of Brinkley and Dr Gwyn has been in a few times to see us.  I just spoke with him about the possibility of going back to MUSC to see if a different set of eyes and hands may be able to nail down something we are missing here.  He assured me that a second opinion is a wise decision and he would support that. 

I asked that we ride it out a day or two here to give them time to treat whatever is going on.  After that Bryan and I can decide if we want to go to MUSC for a second opinion.  I feel pretty strongly that we will be going to MUSC.  Bryan and I have been discussing the possibility of going to their Down Syndrome clinic anyway, so this may be the push we need. 

Poor Brinkley!  We just want some answers and figure out a way to help him.  He has been so miserable lately.  Please pray for guidance and wisdom for us and the medical team as we work through this.

He's Tricky

This post comes to you for the Hartsfield Jackson International Airport better known as ATL.  I can't believe I am here and that I am alone.  We were really excited about this trip and the chance to introduce Brinkley to his Memphis family. 

It's a little weird roaming through the airport alone.  I've never done this before.  Bittersweet... I want and need the getaway, but I also want to be with my baby.  This will be a tough trip.  A couple of friends are meeting me in Memphis and I am sure that they will keep me company. It'll be a nice girls weekend. 

As for Brinkley, Tuesday we started the gastric testing.  We were under the impression that both of the tests would be that day, but only one happened.  I anticipated the second one happening yesterday (as did the nurses and doctors), however it didn't.  The therapist responsible for that test came by today to prepare and will return tomorrow to do the study.  This is the final piece of the puzzle before the doctors can make a plan. 

Oddly enough the test that was done Tuesday didn't show any reflux.  Apparently it wasn't a very good test or suddenly the medicine is working.  Working very well.  Dr Gwyn's words were, "he's tricky."  He said that Downs often comes with many things that just can't be explained.  My Brink is one of a kind and extra special. 

We anticipate that he may be discharged over the weekend and any procedure (if necessary) would be mid week, possibly in Charleston.

Thank you for your continued prayers!  I'm off to MEM!