March 18-21 Down Syndrome Awareness!

For the next several days it was just sitting by Beau's bedside as he was intubated.  As expected, he was heavily sedated because the breathing tube would cause a lot of irritation and they can't risk the chance of him pulling it out.

On Tuesday, The Ear, Nose, and Throat (ENT) team did a scope of Beau's airway (down his nose to his vocal chords) to check things out! They saw a lot of swelling and were unable to get too much information but the doctors started Beau on some steroids to decrease the swelling of his airway. He also spiked a fever of 101 and after a dose of Tylenol it quickly went down.

Over these days, the medical team was constantly watching Beau's levels and how much he was  breathing on his own, over the vent settings.  Most days he did very minimal work because he is so heavily sedated, he was simply resting which was okay too. He would wake up when they would do an oral cleaning kit.

On Friday, March 21th, we celebrated a special day, near and dear to our hearts now that Beau has blesssed us with his life!  March 21st celebrates National Down Syndrome Awareness!  This is celebrated on March 21st because of the date 3-21.  3:21 stands for 3 of the 21st chromosome which characterized people with Down syndrome. We got some t-shirts and wore them proudly today too!!

 This is the post I made for today so I thought I'd share here too...

Today is World Down syndrome Day! Since July 11, 2013 when we first heard the words Down syndrome from my doctor, our life has ventured down a path we never imagined, a path God paved specifically for us, a path He daily walks ahead of us-leading the way! I reflect today on how God has allowed Beau's story to bring Him glory, time and time again! We welcomed Beau into the world 45 days early on September 15th after an urgent c-section. His little body weighed only 3 pounds 9 ounces. I will never forget my first kiss before he was rushed to the NICU or nurse Leah laying him on my chest for my first Beau snuggles at 23 hours old. Since then we have.... shed tears, sat for a total of 4 months by Beau's hospital crib, did hours of kangaroo care, survived the stress of open heart surgery, rejoiced over poopy diapers, written through 3 journals of daily notes on progress and plans, administered medications, removed and placed NG tubes, learned to use pulse ox machines & feeding pumps, had appointments and more appointments and more appointments, celebrated baby milestones, watched intently during echos and IV sticks, exercised the silence button on his stat monitor, smiled on discharge days and smiled through re-admissions too, held baby hands through isolette windows and gave kisses as much as we could... We spent endless hours in prayer, lifting our son to The Lord knowing Beau was IN HIS HANDS, the Great Physician. Though having a child with a Down Syndrome has brought new challenges, today, I thank God for giving us our son, a BEAUtiful and wonderful reflection of His workmanship.

CHKD week 1 (March 10-17)

Monday, March 10

Dr. A came to the rescue again... I can't praise her enough :) !!! After a half-sleepless night, I called to get Beau in to see her this morning because I just couldn't shake the feeling that keeping him at home until Tuesday wasn't smart. I couldn't get a good count of his respirations at home but I knew they were uncomfortably high with heavy retractions.  So she got us in and one of the sonographers did an echo on Beau.  Within minutes of Dr. A seeing Beau, she decided that something "just wasn't right" and there was no "heart" reason that he should be working this hard. She was going to have us transferred to the Children's Hospital of the King's Daughters (CHKD) in Norfolk for further investigation.  So after putting in the referral and waiting for the transport,  Beau was brought by ambulance to the Pediatric Intensive Care Unit (PICU) at CHKD.

Beau got all situated and his breathing continued to stay high.  I stayed with him overnight as I typically do if he's just been switched units or they're unsure what might be going on with him. Again, they were unable to get an IV in him even using the ultrasound machine. :(  His x-ray showed no pulmonary edema and they did an echo as well and everything looked as expected. He fussed ALL NIGHT LONG which is very atypical for him because he only cries for maybe 5 minutes when he's hungry or tired. He took a few ounces by bottle but he was just not comfortable, not himself. :(

Dad was home sick with the stomach bug today so it was actually better that I stayed at home with Beau to keep the germs from spreading.

Tuesday, March 11, 2014

There were no improvements today.  Beau was put on "contact precautions" which means we have to wear a gown, gloves and a mask when visiting him in case he has a viral infection. Speech therapy came by today to watch him bottle feed to see if he was aspirating but he looked great with the bottle. Beau's high respirations and retractions continued through today as well. He continued to be fussy again today and I just knew something wasn't right though we couldn't yet pinpoint it.  Thankfully Dad is feeling better but not back to 100% just yet.

Wednesday, March 12, 2014

Grammy Sue arrives tonight and I was so bummed that Beau was back in the hospital. :( Beau's respirations have steadily increased throughout the last two days and in the morning hours his respirations were about 100 a minute and his heart rate was elevated between 170-200.  It was so hard to just watch him "tug" while breathing. Then he came down with a temp of 104.6 so we know something was going on and they gave him Tylenol immediately. The rapid RSV and flu panel came back negative so the medical staff continued to watch him closely.... They took him off his feeds so his body didn't have to work to digest and put in an IV for fluids and Lasix.

I spent the afternoon at the hospital but as the hours progressed I started to feel terrible myself, nauseous and chills, so the nurse took my temp and it was over 100. So to my better judgement I went home knowing I was no use at the hospital sick myself.  I went home and crawled into bed and Andrew headed over to the hospital after work (he was now feeling better).  At this point the medical staff is fairly convinced that some virus has gone around our household.

My sister, Jilayna, headed to the airport around 5:30pm to pick up my mom and head to church so I knew I could relax at home tonight and Andrew would keep me updated from the hospital.  Around 6:30 the door bell rings!?!?!?!?  I mope to the door and peek out the window to see my OLDER SISTER AND NIECE!!!  I was SHOCKED!!!  My mom and her had been planning the surprise visit and I got to meet my niece, Harlow, for the first time!!  She was born a month and a half after Beau though they were due just ten days apart!!

 This is the first picture I took of her.... LOL!!!  

We were dying of laughter over this one!

Andrew calls me shortly after 8pm to give me an update and he said when he arrived at the hospital it looked like Beau was drowning out of water. :(  Oh my heart hurt for our sweetie.  Andrew just sat there helplessly and watched him struggle.  One of the respiratory therapists came around and after turning the corner into his room said he needed to be intubated (breathing tube put in) immediately! Though no parent hopes for intubation, we knew it would help relax his lungs and heart. They also put in a Central Vascular Line (CVL - a type of IV) in his neck.  All day long I kept thinking.... if we exercise and want our heart rate above say 150 and Beau's heart rate has been around 200 for 12 hours, isn't he just utterly exhausted? They kept assuring me that a baby's heart rate is higher than an adult but I just kept thinking, "there's no way he's not completely out of energy...."  Once Beau was intubated and well sedated, he headed home for the night. As always, we called to check in on Beau throughout the night. I couldn't be there overnight because I was sick and Andrew had to be up for work at 4:30am.

Thursday, March 13, 2014

We took the family to the hospital to see Beau so Becky could meet her nephew for the first time.  Though it was undesirable circumstances, she was still glad to see him. This was as close as cousin Harlow could get to Beau since no children are allowed in the PICU.  

 

They put Beau's nasal tube down past his stomach into his duodenum and started him on continuous feeds.  In addition to the continuous sedation meds, he is also on anti-anxiety drugs (who wouldn't go crazy with a tube down their throat) and antibiotics in case he has an infection (though nothing has come back positive.)  Becasue he is sedated, he just lays there sleeping all day long... it was very hard to see. :(

Friday March 14 - Sunday March 16

Beau is still intubated so pictures are not ideal to look at but here are a few.  He is getting more and more swollen everyday because fluid collects when your body isn't moving. :( The medical team does daily x-rays, blood gas and BMP (labs), and closely watches his fluid input and output. These things, specifically his blood gas will determined when he can be extubated (taken off the vent).

 Beau turned 6 months on March 15th so his friend Rex stood in for him today... 

Kisses are as good as it gets for now.

One thing about having family in town while Beau is in the hospital is that it's hard to be in two places as once.  I wanted to show them around town all the while wishing I could just sit with Beau.  So here are a few pictures from our time with family. (There is one more day of updates at the bottom...)

 Harlow likes Beau's Roarbert!!!

 Harlow and Uncle Andrew!

 Enjoying the beach.

Andrew took my sisters on a tour of base and his shop to see the planes he works on.

 Hanging with my Niece!

 Finding Mermaids

Monday, March 17, 2014

On Sunday afternoon Beau was looking good, he was working over his vent settings which means he was using his lungs to do some of the work!  By Monday morning he was looking even better and his BMP levels looked good so they extubated him at noon!! When he came off he was still tugging a little bit and his respirations were a little high so they tried him on his belly to see if that would help.   We headed to the hospital for them to say a quick goodbye and then went out to lunch (Andrew was working).

We headed to the airport to drop Mom and Bec off.  I got a call about an hour later saying that Beau had to be RE-intubated... WHAT?!?!? His carbon dioxide level blew through the roof (130 when it should be between 35-45) and his Ph was a little low (7 when he should be 7.35-7.45). This means he wasn't able to expel enough of the CO2 himself.  I guess he just wasn't quite ready yet. :(

He is my loving ally and my fortress,
    my tower of safety, my rescuer.
He is my shield, and I take refuge in him...
Psalm 144.2

Just the Weekend (March 8-9)

Saturday March 8, 2014

We had a special party to be at today.  Our dear friends Jackie and Steve are moving in the coming week to California so they had a "see ya later" party at the church. They are another military couple that we know through church and I was in a Bible Study with Jackie.  Beau got on his "Smartie" outfit for the occasion!

 I couldn't love this picture more!

                      We will most definitely miss them.                   Beau is practicing his neck control with daddy!

Sunday, March 9, 2014

Today was just a typical day at home.  Since Beau was cleared healthy when we left CHOP, he got to come to a Sunday morning service at church for the first time!  He got a lil fussy so Andrew took him out into the lobby but it was nice to have the whole family there!

I'd been wanting to take some pictures of Beau with daddy's camo and Jackie passed along one of Graham's outfits that was perfect for my idea!

I just love when his lil' tongue sticks out!

Late in the evening I noticed Beau was breathing more quickly again and started retracting (sucking in under his ribs while he breathes.)  I decided to just watch him carefully.  Overnight when I had to start and stop his feeds I continued to be watchful because his breathing just seemed "off" to me (heavy with retractions and louder than usual) but I wasn't quite ready to take him to the ER.  While talking with Andrew before bed and told him that if  Beau continued this way I would call Dr. A in the morning and see if she could get us in a day early since we already had an appointment on Tuesday.  I just wasn't sure I could wait another 24 hours... my "motherly instincts" were up.....

 Consider it pure joy, my brothers and sisters, 

whenever you face trials of many kinds, 

because you know that the testing  

of your faith produces perseverance.   

Let perseverance finish its work 

so that you may be mature and complete, 

not lacking anything. 

James 1.2-4