Sunday, January 31, 2016

Sunday Update

Yesterday afternoon Brinkley perked up a little and asked for a banana.  He also asked to watch Clubhouse (a.k.a. Mickey Mouse Clubhouse).  He sat up most of the afternoon and talked to me a little.  It was the first time in two or three days that he had eaten or talked to me.  Reese got to come visit for a little while last night and they were so excited to see each other!  Brinkley was hugging and kissing Reese.  (He's had no interest in anyone else since we've been here.)

This afternoon the doctor told us that this is the worst strain of RSV they have seen in several years.  It has been really rough on the babies and medically fragile kids.  He said that some kids have been here 2-3 weeks trying to get back to baseline.  I am certainly hoping that is not the case for us.  Tomorrow makes 7 days.  One thing that works in our favor is that we have a wonderful NP at the pulmonologist's office that insists that I keep some equipment at home (even though I have thought it wasn't necessary).  She's a pretty smart lady and that gives me the ability to take care of some things from home that would require other people to be admitted.  

It looks like at least a couple more days in the PICU and then we'll reevaluate.  

Brink has been eating a little today, all though, he hasn't been drinking.  He actually ate a few Joe Joe's (cookies) and asked to watch Baby Signing Time.  If you know my boy, you know this is a great sign that he is feeling more like himself.  Currently, he's wrestling with a box of crayons and coloring.  

Please continue to pray for him and specifically that his CPAP settings would be able to be adjusted back to home levels.  Pray for our family as it is tough to work out the logistics of having our family split between the hospital and home.  Finally, pray for the family that was in the room around the corner.  It appears that the child passed away yesterday afternoon.  I can't imagine their grief and it is obvious that the recent losses are weighing heavy on the staff.  

Saturday, January 30, 2016

Just a little update

Brinkley rested much better last night.  However, he had a hard time regulating his body temperature.  He stayed at 91 degrees most of the night.  This morning he has gotten up to 96 which is close to his normal of 97.5.  

I just spoke with the attending doctor in the PICU and he said that Brinkley's symptoms are consistent with the current strain of RSV that they are seeing.  ( I had no idea that there were different strains.)  He said that it has been really bad this year.  It appears that they have been treating numerous kids with RSV.  

We will continue to watch him and plan to move back to a regular room when his CPAP machine can be adjusted back to his home settings.  He is resting pretty well today and is back to a regular oxygen cannula for now.  His oxygen requirement is low at this point. He is grumpy, but moving in the right direction!

We tried a different respiratory therapy technique today.  Brinkley wore what our buddy Grayson calls the shaky vest.  It's a belt that goes around the chest, inflates, and then vibrates to break up congestion.  It's a little scary at first, but he did great.  He sat in my lap while using it and it felt like we were sitting on the running washing machine.  Here's a peak: 

Friday, January 29, 2016

There's a first time for everything

As many of you know, Brinkley was born 6 weeks early.  On top of that, he has a heart defect and Down Syndrome.  All of those things can contribute to respiratory issues for children.  Not to mention the fact that I am asthmatic and struggle with chronic respiratory issues and that may give him more of a tendency as well.  Because of all of this, he qualified for the RSV vaccine for two years.  Boy am I glad that he did!  

Sunday he wasn't feeling well and through the night he started running a temperature of 104. He continued to run 103+ fevers all day Monday.  Tuesday morning we saw the pediatrician who admitted us to the hospital.  After a chest x-ray and lab work, we learned that he had RSV.  This is the first time he has had RSV.  This is awful!  I am so glad that he didn't get this as a baby.  I honestly don't know that he could have dealt with it as fragile as he was.

Last night was rough!  HIs oxygen levels decreased drastically and by this morning, he was running a fever of 105. We have had lots of commotion in our room this morning with the residents, nurses, and our pulmonologist coming in and out to check on him.  They want to move him to ICU, but there are no beds available, so we are on the list to go if a room becomes available.  In the meantime, he is wearing his cpap with a new mask.  It looks like a hazmat mask!  With several meds the fever has broken and he is resting.  

We covet your prayers as he is miserable!  

Hazmat Brinkley

Wednesday, January 20, 2016

Appreciate the Wait

Today was the day.  The rite of passage for all females who have made it to the magic age of adulthood... the yearly exam with the Gynecologist.  It is not the most pleasant of experiences and waiting in the office doesn't make the experience any better.  I arrived 30 minutes early, so I knew I'd be waiting a while.  

As my appointment time inched closer the lady at the desk told me that it should only be a few more minutes.  My appointment time came and went and I was still in the waiting room.  After I'd been there about 45 minutes I was called back to start the process.  You know the drill: specimen, finger-stick, blood pressure, the dreaded scale, and the questionnaire about your life and meds.  By the time I got to a room it was 30 minutes past my appointment time.  It's never pleasant to wait, and waiting in a cold exam room (watching the snow fall through the window) in minimal coverings doesn't add to the experience.  My immediate thoughts were of irritation and then I remembered.  

I remembered the day several years ago when I came into that office for an ultrasound for the very first time.  After the initial scans the tech told us that she needed to step out to bring the doctor in.  My doctor wasn't available so one of her partners came in to explain to us that our baby had no heartbeat.  I had never laid eyes on this woman before, but there was genuine concern and compassion in the way that she handled this tough situation.  She sat in that room and cried with me and listened to me spill my heart.  She never rushed me and made me feel like this was the most important thing she would deal with all day.  I had no doubt that from that point on she was my new doctor.

Dr. Katherine Frederick is one of a kind.  She rearranged her schedule to do the D & C following my miscarriage.  She was incredibly encouraging through the process of trying again.  The second time around she followed me very closely to ease my fears.  When we had the abnormal ultrasound with Brinkley she took so much extra time with us.  She personally called me to talk about my lab work and spent close to an hour on the phone with Bryan and I.  Never once did she ever make me feel like my baby was anything less than perfect despite his diagnosis.  Over and over again she has gone above and beyond for me.  

With that in mind, I thought about the young mom who may be in the room next door getting a tough diagnosis.  I thought about the lady who may be scared to death about an unplanned pregnancy.  I thought about the lady that they were working in because something unexpected happened to her.  I thought about the young girl that may be there for the first time scared to death of what the OBGYN's office is all about. I thought about the day I was rushed out of the office to be admitted for my emergency c-section. 

I thought about how each and every appointment that I have had with Dr. Fredrick has been one that I've walked away from knowing that she cared and gave me the best care that she could.  Knowing that she was giving those patients she same great care that she always gives me made me wrap my exam gown a little tighter and settle in to wait patiently (and thankfully) for my turn.  

Thursday, January 7, 2016

From the Cutting Room Floor: BOTS Part 2

Here's a few more Brinkley on the Shelf extras...

From the cutting room floor: Brinkley on the shelf

If you couldn't get enough of Brinkley on the shelf here's a few extras to enjoy.