CHD Awareness Week! (Feb 8-9)

Saturday February 8, 2013

Beau had a hard day when it came to taking his food and medications.  He would feed 1 or 2 ounces but then throw it all up.  Most of the time it is after or before receiving his medication.  He had to receive a couple additional medications today for low potassium, chloride and sodium.  He has never thrown up before in his 5 months of life so we were concerned.   It specifically happened after he took his potassium and a stool-softener which clearly tasted horrible! These episodes of vomit seemed to be related to the medication so we brainstormed ideas to get him to keep down his meds and milk!  By the late evenings hours, they were mixing his meds with small doses of milk and he seemed to keep that down better.  So he would get 1oz with a med and another without.

They took him off the nitric oxide today and they're slowly weaning him off the oxygen - he is down to 0.75L/min.  He had 33mL drainage from his chest tube (under the 100mL goal) so they hope to get that line out soon.  Because they have been unable to get IV access, they have been using his right atrial line (RA is a central line to the heart) but they do not prefer to use it for additional medications unless needed. Thankfully they have been able to do quick sticks to draw blood when needed! They are planning to put in a PICC line on Monday and take out the RA line. They decreased the Milronome medication which dialates blood vessels to increase cardiac output.  They stopped one of the diuretic medications and decreased his Lasix dose (he receives every 8 hours) to keep urine output consistent. 

We are not able to hold Beau yet until that RA line comes out; for now we give him kisses only!

 We love you precious boy.

 fingers and toes :)

 Sunday February 9, 2013

I called at 4am this morning and the nurse informed me that they began giving Beau IV fluids for a short time (but then shut them off by 9:30am.)  Due to his low milk intake yesterday, they wanted to make sure he was still receiving fluids needed in his body.  However he did keep down 60mL (2 ounces) and 30mL (one ounce) overnight.

This morning the nurses weren't able to get a good "stick" for a blood sample so they had to use the RA line to draw from.  After the nurse change,  she did a check on the RA line and was not able to pull blood back from it anymore.  Because it is placed directly into the atrium of the heart, it's important that its placement is correct.  The sonography team used saline solution and an echocardiogram to see where inserted fluid is going through the RA line.  Thankfully it IS placed properly still.  This line will come out tomorrow after proper PICC placement.

Beau's chest tube came out today!!  Woohoo!!  Now he's down to only 1 actual line in his body and of course still hooked up to the nasal cannula and monitoring devices.  His O2 is also down to 0.25L/min so hopefully the nasal cannula will come out soon, too!

He got another slight fever today of 99.1 so they're watching that closely and will administer Tylenol as needed.

Our time in the CICU has turned into a longer stay than anticipated, but we're thankful for the great care they are giving Beau.  He is still very sleepy/relaxed and has not needed any pain medication today.  He seems comfortable and is showing us when he wants to eat which is a good thing. He is down to 11 pounds 3 ounces (down a pound) so we want him to get back into his normal eating habits!

                                     Check out this full belly!


We really missed our church family today as Sundays are a highlight of our week.  We are VERY thankful for our church family and all the prayers they send up for us.  And an extra thanks to some special friends who are wearing red for Congenital Heart Defect Awareness Week (and Congenital Heart Disease Month), too! Large chromosomal abnormalities such as Trisomies 21, 13, and 18 cause about 5–8% of cases of congenital heart defects, with Trisomy 21 being the most common genetic cause... that's Beau! We have the best friends and family in the world!!

 
















 


The Lord himself watches over you.  

The Lord stands beside you as your protective shade.  

Psalm 121.5

First days in CICU (Feb 4-7)

Tuesday, February 4, 2014 - post surgery

Beau was very sedated as he came out of surgery and will be for the coming 24+ hours.  He is on many medications for heart function, sedation, and pain relief.  Andrew and I went home in the evening to rest and catch up on some sleep after an exhausting day.

When I called for an update at 10:30 that evening, I was informed Beau had a few drops in his blood pressure. They began to adjust his medications accordingly - off some and on others.  They did an echo which showed there was less blood on the left side of the heart.  The right side was not squeezing and showed the blood backing up a bit in the right ventricle.  They started to give him Nitric oxide through his nasal cannula to get blood moving through the lungs and epinephrine to stimulate heart function.

Here is the set up of Beau's area in our pod.

These cute balloons for Congenital Heart Disease Awareness Month are up at the hospital!

Wednesday, February 5, 2014  

I called this morning for another update at 6:30am.  Overnight, Beau had two more drops in his blood pressure. His chest x-ray looked good but he seemed to be retaining extra fluid - his urine output had been lower than expected.  They did some more medication adjustments.  They began giving him calcium to raise blood pressure and another with a high protein content to move fluids to the vessels for elimination.  They also started him on Lasix (a diuretic) to help with his fluid retention.  The Lasix was not compatible with some of the other medications he was receiving so they had to put in another IV in his left arm.

Beau had an x-ray before we arrived at the hospital and the nurse showed us the photos after.  It was fun to see the metal sutures in his chest holding his breast bone back together.  If you look closely you can also see the chest tube, the right atrial line, and his pacing wires.

He started trying to feed for the first time at 10am with 25mL and took it awesome.  That was increased to 40mL at 1pm and up to 60mL by 5pm.  He spiked a little bit of a temperature today to 101 degrees but with some tylenol that went down quickly.  At noon he was taken off his sedation medications but his Lasix was increased due to continued low urine output. Throughout the afternoon hours he was taken off his another medication and is now receiving pain medications intermittently or as needed.

We were at the hospital a little later today so we stuck close by the hotel for dinner tonight.

He opened his eyes for us a little bit today but still very medicated.

Thursday, February 6, 2014

I called for an update at 2:30am  today and Beau's night nurse told us his stats were very stable.  He took 80mL  (almost 3 ounces) from a bottle at 10:30pm and 2oz at 2am.  The doctors called for another diuretic because his urine output still wasn't where they wanted.

By 7am, Beau still hadn't stooled since surgery so he is now getting stool softeners to see if they help. Even the glycerine suppository last night at 8pm didn't do the trick.  This is very common for kids after surgery due to all the medications and sedation.

Early today, he began getting Oxicodon and Tylenol for pain instead of the morphine.  The catheter and rectal temperature probe were removed today.  Doctors called for an increased dose of the Lasix as his urine output it still low.  They began doing physiotherapy, "beating" on Beau's chest and back with a soft rubber "block" in hopes to loosen some of the fluid buildup. This sounds really scary but he actually really likes it and relaxes.

At 2pm they removed the bandage over Beau's chest incision.  It was cool to see how clean it looks and amazing what skin glue can do!

Then they did an echo and we got to see Beau's custom made heart!  It was amazing to see the four separate chambers with two pumping valves!!!  I was blown away and amazed!

In late afternoon around 5pm, they removed the arterial line in his arm as it was causing some bruising and also the IV in his right leg as it was no longer flushing.

He is still bottle feeding awesome and is consistently taking 3 or 4 ounces every 4 hours.  He was much more awake and looking around today than in the days prior.

He had 138mL of drainage from his chest tube today.  The limits should be below 100 before the tube gets removed.  A child can absorb between 50-100mL a day so the tube needs to stay in for at least another day due to these levels.

At 10pm he receives a medication by mouth to help him poop!  Well he vomited this right up and then was retching for quite a while during his feed. :/  not sure what this might indicate but the nurses will watch it.

Thursday night we finally got poop!  Yes, we're happy about this!!


Friday, February 7, 2014

 Yesterday's echo came back looking very good.  There are three small leaks in his VSD patch (between bottom two ventricles) but nothing of concern or needing additional repair.  The right side of his heart still has some thickening as well.  He is still on one medication to help with his heart function.

Today they are weaning him off his Nirtic Oxide over the next several hours so by the time I called at midnight, he was off of it.

They want to get the RA line out of his heart so they plan to put in a PICC line (a longer lasting type of IV that goes almost directly to the heart.)  He had two or three of these during his hospital stay after birth so we're familiar with them.  He will have to be sedated for this prodecure on Monday. 

At 6:30pm he took 85mL of his bottle but vomited it up. :/ And again at 10:30 he received that medication again to help him poop and he vomited again.  He retched for over an hour.

His chest tube had only 33mL of drainage today which was awesome!  They want to keep it in a little while longer because sometimes when the RA line is taken out of the heart, it can cause some bleeding.  So in case that were to happen, they want the chest tube in to help eliminate that blood. They will another x-ray on Sunday morning to check and see how things look.

 Beau was awake and looking around a lot today.

 We love Beau's burp face!

In honor of the olympics, they decorated the bridge between the cardiac wards. 

 Our Family

Do not be afraid, for I am with you.  

Do not be discouraged, for I am your God.  

I will strengthen you and help you.  

I will hold you up with my victorious hand.  

Isaiah 41.10

Beau's Surgery (Feb 2-4)

I'll start from the beginning...

We originally had Beau's surgery planned for Monday, February 3rd, with pre-op appointments on Friday, Jan 31st.  Well, on Wednesday morning (after getting 8 inches of snow the night before) Andrew and I were talking in the kitchen about road conditions for our Thursday morning drive to Philadelphia and how we were worried about what vehicle would be a better choice to drive if the road conditions were not improved before them.  Within MINUTES,  we got a call from the cardiac center at Children's Hospital of Philadelphia asking if we could push his surgery back just a day with pre-op appointments on Monday (Feb 3) instead of Fri (Jan 31) due to the surgeon needing to arrange his schedule.  We were very relieved and knew the Lord was orchestrating safe travel before surgery!

So Sunday morning we got on the road around 9am after gassing up and getting snacks. We decided to call some family and friends who live on the way to see if we could stop by and visit.  The Brown Family, friends of the Muhs family from when they lived in DC, accepted our invitation to stop by so they could meet Beau.  So on our way we stopped by their house and enjoyed some delicious chili, puppy Briar cuddles, some poor SuperBowl football, and good conversation. We took quite the break and got to our hotel around 10pm on Sunday night.  Beau was a ROCKSTAR in the car and slept pretty much the whole way.

Sharon and Beau                 Andrew and Briar


On Monday morning (Feb 3), we were up early and to the hospital by 9:30am for appointments at the Children's Hospital of Philadelphia.  We had an ECG (checks electrical waves of Beau's heart), an echocardiogram (picture of heart) and he had pre-surgery blood work taken.  Below is a picture of Beau's heart that is the best view of his "open" heart.  When the one large valve in the middle of his heart is open, it is one large open space in his heart where all his de-oxygenated and oxygenated blood is mixing.  I think it's INCREDIBLY fascinating so I thought I'd share.

One of the physician's assistants explained the surgery again to us.  She told us about the wires and tubes Beau would be hooked to after surgery and also explained what material Beau's patches would be made of to fix his walls and pulmonary artery.  Pericardium (the double-walled membrane sac around the heart) will be used as the patch between the R and L atrium to create the top two heart chambers. Dacron (a synthetic material similar to polyester) will be used to create the patch between the R and L ventricles to create the two, separate bottom pumping chambers.  Lastly, they will use homograft (a tissue graft donated from a donor... yes, cadaver tissue) as the patch for the pulmonary artery. It was all very informative!

 

Beau's final echo and ECG before surgery

Andrew and I had dinner at the TGIFridays which is attached to the hotel.  By now my nerves were kicking in! I just had this horrible ache in my chest that I just could not shake.  I am not a typical worrier and handle my emotions pretty well so this was new for me.  I read a quote by Beth Moore earlier this week that I just love and I wanted to share: Faith is not believing in my own unshakable belief.  Faith is believing an unshakable God when everything in me trembles and quakes.  It reminded me of one of my favorite Bible verses: Psalm 62.8 Truly He is my rock and my salvation; He is my fortress, I will not be shaken.  It gave me assurance that Our ROCK has Beau IN HIS HANDS and I need not worry as it doesn't change the outcome.

Here are some final photos of Beau with a 'clean' chest the night before surgery. 

 Getting some Mommy and Daddy Love.

 February 4, 2014
So the BIG day finally arrived!  After about 4 hours of sleep and a morning busy, we were out of the hotel room by 7am to get there by 8am.  After check-in we got some Beau cuddle time.

We were brought back to the pre-op pod room to prep Beau.  He got a bath and the nurses took all his vital signs.  The nurse told us she would get a call when to give Beau his pre-operation med to settle him down before our separation.  The surgeon's previous surgery must have run long because we waited for almost an hour before they finally called down.  He was given the pre-med at 9:47am. Then close to an hour after that, the anesthesiologist finally showed up to take Beau away.  This waiting period actually gave us a lot of time to just be with Beau and relaxed our nerves a bit.  We walked to the elevators with the anesthesiologist and gave Beau his last kisses and they were off (this was at 10:38).  

Love these faces!

Here are some photos of Beau getting "checked out" and him in his purple space-koala gown! 

We had to wait for such a long time and he was VERY fascinated by the glow-song activity box.

From there, Beau's nurse took us to a room to wait for Dr. Spray.  We talked with her for about 45 minutes before he was able to show up.  We talked with him for less than 10 minutes and he explained the procedure again to us and then by 11:30 he was off to give Beau his CUSTOM MADE HEART!!  Our nurse then gave us a short tour of the Cardiac Intensive Care Unit (CICU) and took us to the waiting area and there was a screen that told us the surgeon began at 11:46am.  I took a quick pump break and by the time I was done and got back to the waiting room, the nurse came with her first update at 12:05pm to tell us Dr. Spray was already sewing on patches!! We went down to the hospital cafeteria (which was surprisingly good). By the time we got back up, within minutes of sitting down, the nurse called again (now 1:11pm) to tell us the surgery was done!  The doctor was doing the trans-esophageal echo to check things out before they patch Beau up! This is a procedure where they put the echo probe down his throat to get the pictures as opposed to through his chest. We were overwhelmed with relief and could hardly believe the surgery was finished so fast!  Dr. Spray meant it when he said he had been doing this for 30 years! 

Here was a little "Sunshine" while we waited!

The nurse came to get us 1:45pm to tell us Beau was finished, sewn back up and the breathing tube was taken out!  WOOHOO!!  Praise God!!!  We were then taken to a private waiting room for Dr. Spray to come give us the synopsis.  He came in to tell us the surgery was very successful with no surprises (just what the echo showed).  He told us the patches were perfect and did not even leak! Another sigh of relief.  From there we had to wait a while longer before being able to see our sweetie for the first time. He looked great with very little swelling and of course had about 8 tubes in his body.  Below is a diagram to tell you what the different lines are and what they're for.

Arterial Line - Monitors Blood Pressure

Right Atrial Line - Checks pressure in the right atrium

Leads - Check his heart rate, respiration, ECG waves

IV in right leg - For medications and IV fluid

Rectal Temp Probe - reads a core temperature

Catheter - Urine output

Nasal Cannula - Gives Beau oxygen at 100%.  This is standard for children after surgery and will decrease in the coming days.

Pacing Wires -  Sit outside the heart in case the rhythms are abnormal, gives access to an external pacemaker if needed.

IV in left arm -  for Lasix diuretic (Diuretic is used for fluid elimination from the body.)

Chest Tube - Drains fluids from the chest cavity by using a low amount of suction to drain into a bulb for collection (called a Jackson-Pratt Drain).

Pulse Oxygen Monitor - monitors the amount of oxygen the blood is carrying to the extremities.

So you might think it's overwhelming a bit.  Most probably think it is.  However, with Beau's extended NICU and hospital stay, we are used to all the lines and cords. Ultimately, we have the mentality of, "Whatever is takes for a little man to be healthy again." 

All and all, today went very smoothy and we are beyond relieved and thankful. THANKFUL for The Great Physician who had an amazing hand of protection and healing on our baby boy.  THANKFUL for the amazing medical coverage we get through Tri-care. THANKFUL for Dr. Alderson, our cardiologist, for her perfect referral to Dr. Spray at CHOP.  THANKFUL for Dr. Spray and his expertise in cardio-thoracic surgery. THANKFUL for the medical team taking care of Beau now in the CICU. THANKFUL for all those who donated blood (and tissue) for Beau's heart.  THANKFUL for the hundreds of thousands of people who were praying for Beau today, the days leading up to surgery, and now for his recovery.  We have an amazing support system and words can't truly express our gratitude. 

 Truly He is my rock and my salvation;  
He is my fortress, I will not be shaken. 
Psalm 62.8