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!

A lot can happen in a year

One year ago today I created and posted this picture:

I could never have imagined the road that was before us.  

There wasn't a big celebration of this anniversary today.  Instead, there were many phone calls with doctors and therapists and discussions with the PICU staff about what the next few days hold for Brinkley.

Brinkley's respiratory issues seem to be fairly well under control now, so we will start working on his gastric issues now.  Tomorrow we are expecting to have an MII and a swallow study.  These help gather specific data about his reflux so that we can decide how best to tackle the issues.  We are potentially looking at a surgical procedure.  There was some debate today about where that would need to happen (GHS or MUSC).  Once a plan of action is decided, Dr Kavarana (our cardiac surgeon) will be consulted and decide where the surgery would need to happen.  The placement of Brinkley's pacemaker will make that a tricky decision.  

Today he was comfortable and seemed more like himself.  I even got a smile out of him tonight.  (I think that was because I turned the basketball game on for him.)  When I arrived tonight to get him settled for the night, this is what I found:

Thank you for your continued prayers.  Please pray for him tomorrow as I am sure he will be grumpy.  He hates to be messed with and will be having two tests done.  Also, continue to pray for wisdom as we give our opinions on the treatment plans.

Answered Prayers!

This is the face that welcomed me this morning.  According to the nurse and resident this was an improvement from a couple of hours before.  Poor Brinkley's eyes were almost swollen shut and the cannula was leaving indentions in his cheeks.  He was so pitful and just miserable.  

This afternoon some of the swelling went down he was able to rest somewhat comfortably.  Around 5:30 I left to join Bryan for dinner and when we returned a few hours later we found a different child!  Though he has a LONG way to go, we saw answer to prayer right in front of us today.  Just as we asked, he is much more comfortable and seems a little more like himself.  

For the first time all week I saw him talk and play a little.  We could even see his eyes!  The swelling seemed to be almost completely gone around his eyes.  Here are a couple of videos that I made before we left tonight.

Thank you for your prayers and please continue them as we will have to make some big decisions over the next few days about his treatment.  

A not so great update

Brinkley had a rough night.  They attempted to start feeding him yesterday afternoon and he did not tolerate it through the night.  He threw up several times and the respiratory issues are much worse. 

We have been through a lot, but I have never seen him this pitiful and miserable.  I've never felt like he was sick before, but he is truly sick now.  It is heartbreaking. 

Feeds have been stopped and the nurse is currently placing an NJ tube.  This runs through his nose into his intestines to by pass the stomach completely.  He has not been able to tolerate food for a week now, so this is necessary to get him nutrition.

Dr Avant just told me to expect this to be a lengthy stay.  We are looking at at least another week.  I pray he starts improving soon.  My heart can't take much more. 

I want my baby back

Brinkley is still in PICU and on the high flow 02 machine.  Yesterday they were able to go down on the 02, but today we went back up.  My poor baby is miserable.  His breathing is still labored and he is coughing a lot.  This morning his face was so swollen that his eyes could only squint. 

They restated his Lasix and that brought the swelling down a fair amount.  He has been on fluids only for a few days to try to give the gastric system a break while we focus on the lungs.  This morning he had a bad spell where his 02 got low and stayed.  He was really upset so it took a long time to get him calmed down and balanced out.  It was the first time we have seen him blue since his heart repair. 

He had another chest xray today, but I didn't get a report on it due to some critical issues that came up with the kids on either side of Brinkley.  I feel like it was worse than before though. 

Cardiology checked on us and answered some questions that I had.  Also, a social worker came today to help me start the process of applying for the medically complex children's waiver.  This would help us to possibly get Brinkley a home health nurse or into a special needs day care.  I am concerned about how I will mange both boys all day long when Reese is out of school.  Qualifying for assistance would be a huge relief since we could not afford to pay for the help out of our own pocket.

Pray for relief for Brinkley.  It has been almost a week since I have seen him smile and he isn't "talking" very much either.  He feels bad and is just not himself.  I want my happy baby back!  (Preferably the non-Sumo version.)

Update on our little celebrity

As crazy as it sounds, we are glad to be back in PICU.  We are familiar with the staff and they are familiar with Brinkley.  Our day shift nurse was one that that has had Brinkley several times before.  Dr Gwyn has reviewed Brinkley's case before and was very aware of his history.  I was very pleased with the time that he spent with me talking through our current situation and his opinion and plan for where to go from here.

Dr Gwyn says that it is necessary to treat the respiratory distress first and then tackle the gastric issues.   For now Brinkley is on high flow oxygen.  He is on 30% oxygen (21% is room air), so he is not on a high dosage.  However, he is middle of the road on the level of pressure.  He needs the 02 to be coming in at a high rate of pressure to keep his levels stable.  We are working on coming down on that.  Bryan and I both agreed that he is much more comfortable and his breathing looks better at this level.

Taking into consideration the fact that we just dealt with this a month ago thinking it was a virus, Dr Gwyn doesn't want to waste any time assuming that we are dealing with a virus.  He feels certain that it is reflux related (as did the pediatrician and cardiologist) and wants to approach it from that angle.  As soon as we can come off the high flow oxygen we will begin tweeking the formula and reflux meds.  We are going to redo his swallow study and GI scans to determine the severity of the reflux.  After this we will see if any procedures are necessary.  We may be looking at making his G tube into a J tube meaning that instead of running into his stomach (as it does now) it would go into the intestines.  Another option is to do a nissen which is a band that helps to control the sphincter and hold the gastric content back.  We hope to be off the 02 machine and working on the reflux by Friday.  

Tonight the resident introduced herself to me and informed me that Brinkley is quite the celebrity around there.  He seems to make quite the impression on nurses.  Meredith, our nurse tonight, is one that we have had before and she told me that the nurse fight over who gets to take Brinkley.  They told us the same thing in PCICU at MUSC.  He is quite the man!  I can't say I blame them.  I think he is pretty awesome too!

Welcome back to GHS

After watching my baby suffer with horrible reflux for almost two weeks with no relief, I couldn't take it anymore.  His breathing was continuing to be affected and he was just generally miserable.  Sunday night I didn't sleep and couldn't hold myself together early Monday morning.  I didn't know how to articulate what was going on, but I knew it wasn't right and we needed help.  I called the answering service for both our pediatrican and cardiologist. 

I was able to get in touch with the pediatrician first and they wanted me to come in immediately.  Our doctor was not in the office, but one of her partners saw us and took great care of us.  We ended up heading out the door in yet another ambulance.  This time, however, they put me on the stretcher holding Brinkley.  (What can I say, this little fella is bringing me new adventures everyday.)  You can imagine the looks I got being rolled into the pediatric ER. 

After a consult with cardiology we were admitted.  Dr. Malpass was the cardiologist on call and he said that Brinkley's heart looks better than ever.  (A bright spot in the day!) He assured us that this was not cardiac related and advised me that he felt like Brinkley may be developing chemical pneumonia due to aspirating the reflux.  Dr. Cumar (peds) had said the same thing.  So here we are at Children's Hospital trying to take care of the reflux to prevent this from continuing to happen and to treat the pneumonia if that is occurring (no definite word on that yet). 

I spent the night Monday and didn't sleep due to Brinkley coughing and crying all night.  I was exhausted yesterday!  Bryan stayed last night and has since been moved to PICU.  This is a relief as we will be able to take breaks since he is constantly monitored there.  They had debated moving him yesterday.  They can offer different types of 02 treatments in PICU that aren't available on the floor. 

Please continue to pay for our sweet baby.  Pray for comfort and relief for him and wisdom for the doctors as we try to find a regimen that will better control the reflux. 

*As a side note, I want to say that we could not be more pleased with our pediatrician's office!  We love Dr Godwin and have been impressed with her new partners as well.  If you are in need of a pediatrician I HIGHLY recommend Pediatric Associates of Powdersville.  Dr. Godwin is wonderful and we have had great experiences with Dr Logan and Dr Cumar as well.

Peeking Through

One dreary, cloudy morning recently the boys and I were driving somewhere and I noticed something that I never had before.  The sky was completely gray except for this one tiny patch of beautiful blue that peeked out as the dark clouds were moving by.  I couldn't get a picture, but this is pretty close to what I saw:

Many times I had seen rays of sunshine beaming through heavy cloud cover, but there was something different about how this small patch of blue kept forcing it's way through the clouds.  I know it sounds over spiritual, (no, I don't always think like this. I'm not that good) but the Lord really used that patch to speak to me.  

So many times lately my life seems to be filled with these heavy clouds.  It's not necessarily a storm or rainy, just really cloudy.  Things aren't awful or terribly rough, just a little harder to see the bright spots.  

I think that is pretty common for a lot of people, especially those who may be dealing with special needs of family members or themselves.  To be honest there are days when I am so overwhelmed I almost feel like I can't function.  Reese needs/wants my attention and is demanding it while Brinkley needs to be fed or one of his monitors or machines is going off.  Figuring out how to balance the legitimate needs of both of my children when one is so much more dependent on me than the other.  Reese's behavior issues and his emotional outbursts that I am clueless about how to manage.  Trying to figure out what is normal or ok for Brinkley and which of his newest symptoms require immediate medical attention and what can wait for our next appointment.  Learning how to squeeze another hour into a day or week for that new specialist or recheck that we need to get in.  And I haven't even thought about grocery shopping, menu planning, cleaning, laundry, or any of the hundred other things that goes into managing a household.  Poor Bryan gets what little bit I have left over (if any).  I could go on and on.

I don't want sympathy, I want to be real.  There are people all around us who deal with these kinds of things everyday and we don't have a clue.  As much as you try, you will never fully understand what they are dealing with and how they must feel inside.  Even other folks that have walked this journey of being a care giver for a medically complex person can't know for sure what you deal with because every case is so different.  This is not a "fraternity" that any of us expected to be initiated into. 

This is a hard road and it is one that you can not face alone.  Even though no situation is exactly the same, other caregivers are our best resource.  They understand what we are dealing with more than anyone.  A support network is crucial!  It helps me to know I am not a terrible mom when I hear that other parents are overwhelmed too.  It helps to have these folks that know specifically how to pray for me.  They know better than anyone the strength and wisdom that is needed to make it through each and every day of this journey.  

There is no way that I could function on this journey without having the reassurance of knowing that God is well aware of what I am dealing with.  He sifted this all through His hand before it ever got to me.  Just like every other hurdle in my life, He is in control of this one too and He is waiting to give me what I need each day to make through that day.  It is DAY by Day.  That is what He promises, strength and wisdom for today.  I have to start over tomorrow and trust Him again for strength for that day.  I won't lie, its not always easy and by no means do I have it figured out, but thank God I don't have to.  That is one more stress that I don't need.  

It's my job to keep looking for those patches of blue peeking through on what seem to be the cloudiest days.  It's there, He promises it's there.  I have to make the effort to search for it though.  His mercies and promises are new everyday, even the gloomiest, grayest days.