Brady Update, Day 9

So, yesterday was tough. We had been told he'd get off the vent, and that didn't happen. We were left with one non-sedated, pissed off little baby. I was so thankful that Brad's parents came in for a little while so that I could get a rest from patting Brady's chest and singing to him. Brad went back to work this week, so there were times where I really was reaching out to anyone around us for personal interaction, and as a result have been able to connect with the families in our sleep room suite. Most of them have children in the Cardiac Care Unit as well, and it's nice to pray for someone else's baby, knowing that we have so many praying for us.

This morning, I woke up, determined to just get this day done, and not have a bad attitude about it, no matter the outcome. After the doctors did their rounds (I swear, Brady was the last kid they came to today!) they decided to take his breathing tube out! It was great to see his little face, and he calmed down immediately after being freed of that thing.

The doctors monitored him closely, and although his blood test showed that he was properly oxygenating his blood on his own, he looked a little labored, and they put a mask over his nose and mouth to help his breathing. This wasn't as invasive, and with the help of a little sedative, he seemed to tolerate it well. I was a little crestfallen, however, as I had hoped to be able to just hold my little man again.

My folks had come in, so my mom sang to Brady while my dad held his hand, and they got him off to sleep... Again, I wish I had inherited my mother's singing abilities! They come in handy once again!

Now, the best news of tonight. When the doctors came through on their nightly checks, the attending physician a)thought I was a nurse b) asked my opinion on if I thought that he still needed this much breathing support. I had no idea he thought I was a nurse, all I knew was that Brady was not settling down with the face mask, so I told him so. So, he said, "ok, get respiratory in here and let's take this mask off." I then told him I wasn't a nurse, just mom. He faltered a little bit, then said, "Well, what you said is still true. How about I get respiratory in here and we'll take off this mask?"

An hour later, his tests came back that he was in good shape, and we were free and clear of the breathing devices! The real nurse and I gave him a little sponge bath and tucked him into bed, and for the first night that I can remember, Brady fell asleep on his own, thumb in mouth and blanket in hand.

Your encouragement today came at all the right times. Thank you.

God has put such joy in my heart today, and has blown me away by the witness that Brady is to His glory. That little boy has touched so many people, not because he's this baby prodigy, but because of the love he evokes from those he encounters. People I haven't spoken to in years are praying for this little one. The kingdom of God is one that is connected and real. It prays together, serves together and lives selflessly together. I have heard stories of people I don't know fasting for Brady's health, waking up in the middle of the night to pray for us. Painting walls. Lifting up our families. Gifting our nursing staff. And while the focus of the prayer is on Brady's health, it is Christ who is reflected in all of this. If Brady can help show Christ in those he touches, I am so thankful to be his mother. I expect that he is going to keep reminding me into my old age about who we are to model, and at times, put me to shame. Our culture makes it easy to be selfish, materialistic, lazy & complacent. But being Brady's mom hasn't, so far. I can't be selfish when I look at the moms and dads in our sleep room suite who have a much harder situation than us, and still have a positive attitude. I can't be materialistic when I step back and see that everything I need is provided for by the Hand of God. Nor can I be lazy or complacent when I know that people are being so diligent on Brady's behalf- I can be fighting for him too!

So thank you all for reflecting that to Brad and I, whether you mean it or not. It's just the affect that Brady had on people.

Brady Update, Day 7

Well, it's been a week- thank you all so much for continuing to pray for our family!

Brady's stats are awesome today, he came  down or off quite a few meds today.  They are expecting him to come off his ventilator tomorrow- yay!

Part of the process of him coming off his vent is weaning him off all sedation.  Right now, he is at about 1/4 of what he was on at the peak of his treatment.  This basically means that he is awake for most of the day.  While it's so good to see him up and looking at us, it is really hard to see him so upset that he has this tube down his throat.  He can't make any sounds, and he just tries to get it out all the time, so he has arm immobilizers on both to try and prevent him from ripping his tubing and lines out.

Since he felt everything today, he had a hard time sleeping.  He could only be pacified with someone patting his chest and stroking the hairs on his head... poor little man.  After about 30 minutes of work, he'd fall asleep for 45 minutes or so, or until he jerked himself into a position where the breathing tube wouldn't follow.  At one point, Brad's mom, his nurse and I all worked sequentially for about 4 hours to get him to nap.  Whew!  Right now we've barricaded his door, so any non-imperative checkins from his medical staff can't interrupt this much-needed rest.

After the tube comes out, it should only be a few more days here!  As wonderful as this facility is (they really have thought of everything), Brad and I can't wait to have our little boy back to being his giggly little self.

You don't know how much you're helping just by giving us feedback to these posts.  It's easy to feel isolated here, or that this is something we are struggling with alone, but any time I start to feel that way, I get a Facebook alert that someone commented on a post, or an email with a kind word.  It all helps.

Pray for Brady tonight, and that he's able to get some good sleep, and that Brady and I would too...

Gotta go, he's up!

Brady Update, Day 6

Good morning!

Sorry for not writing yesterday, but there wasn't much to report.

Brady has held stable, and continues to show better numbers by the hour. He is getting all of his sustenance from food now, with extra IV fluid not being necessary. His blood clot has dissolved! Praise God! They have taken him off even more sedation, so he was awake when we came up to see him this morning! It was so great to see his little eyes. I didn't know that I would miss rocking him to sleep or being able to feel his hefty weight in my arms... The things we take for granted.

While being here, we've been able to meet some great nurses (this staff is incredible. We've yet to meet anyone we haven't liked. Even someone my father-in law hasn't liked... Miracles keep happening :) ) and it is a great example of how God is the author of all life. He is reflected in every person you and I meet. Everyone has gifts that they've been given, and when they are being used in the fullest, it's like getting a little glimpse of God that we aren't used to seeing. Since neither Brad or I have been gifted medically, it's just been wonderful to see how God is using his children in every walk.

We have so much to be thankful for today.... And they're saying he may come off the ventilator Monday! Our prayer requests are that Brady feels safe and doesn't freak out too much about the tube down his throat. Pray for strength for us as Brad goes back to work next week and we are going to be spending time with Brady 24/7 so that when he wakes up we're there to comfort him. Continue to pray for the recession of the virus. And give thanks to God that Brady is getting the best care possible.

I hope that you all are able to encounter someone with different gifts than you, and that when you do, you're able to see a side of your Creator you wouldn't have been exposed to otherwise.


Psalm 48:9-10

9 Within your temple, O God,
we meditate on your unfailing love.
10 Like your name, O God,
your praise reaches to the ends of the earth;
your right hand is filled with righteousness.

Brady Update, Day 4

Not much new to report:

Brady held stable all night and runs a fever now and again, which is to be expected as his body is fighting the viruses. He was kept off the paralytic and is responsive to touch and loud sounds...it's nice to see some sign of life in him.

After a tumultuous trip home from Arizona, Brad's parents made it home and were able to see Brady. They said it made them feel better to see that he doesn't really look sick (aside from the cords he's hooked up to), so hopefully that report puts some of you at home at ease a bit.

I know that they don't want this attention, but our families and a wonderful friend from church really did us a solid today and helped us by moving us out of our apartment and into a town home, as our lease is scheduled to end next week and we were in no position to do any of that. Our home church has put a group together to re-paint our old apartment back to what it was. I am floored and so thankful. Again, God's people working in our lives. Amazing.

Today we were blessed to have a chance to walk and grab a cup of coffee (something I dearly miss about city life). I felt almost normal again, except that all Brad and I could talk about was how excited we were to get our smiling, goofy baby back so we could show him the city too. It's funny how much changes in a year. Even with everything that has happened, I wouldn't change a single thing. Obviously I wish my child wasn't ill or that he didn't have this heart defect that affects every thing he does, but I am so thankful that God has kept our eyes and hearts open to His purpose in all of this. We were created to do His work, and these long days in hospital rooms create new relationships, a time of peace and communication for Brad and I, and time to dwell in God's presence without the world knocking at my door with something I should be doing instead. Because while we are here, we just have to BE. I'm learning to love that.

Psalm 40:1-5

I waited patiently for The Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him.
Blessed is the one
who trusts in the Lord,
who does not look proud,
to those who turn aside to false gods.
Many, Lord my God,
are the wonders you have for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.

Brady Update, Day 3

First of all, Brad and I want to express our thanks to all of our friends, family and those of you that we've never met who are walking along with us on this journey.  We have been overwhelmed and humbled by the huge outpouring of prayer over Brady's health, our physical and emotional needs, and probably lots of things I have no clue about.  This is what Christ's body looks like, mobilized and taking action.  This is the type of faith that I am so thrilled for Brady to see modeled in those people who have been so touched by his story already- and he's not even 9 months old.  So, with tears in my eyes, I thank you.

On to today's news:

Brady developed a blod clot in his IVC (The inferior vena cava (or IVC), also known as the posterior vena cava, is the large vein that carries de-oxygenated blood from the lower half of the body into the right atrium of the heart.- thank you Wikipedia!)  late last night, so they performed an ultrasound to find out for sure.

His A-Line went bad last night (it wasn't able to draw labs any more) and because of his Down Syndrome, he has extra small arteries and it's hard for them to re-insert them.  They performed a small procedure where the opened up his left wrist and inserted the line with the artery visible.  This means they now have a clear reading of his blood pressure and other vital signs.

He's tested negative for any bacterial infection for the last 48 hours (Praise God!) which rules out things like pneumonia, so they took him off antibiotics.

Because he held stable for the last 24 hours under the current routine, they took him off the paralytic medication, added an anti-coagulant (for the blod clot) and have started giving him formula through an NG tube in addition to IV fluids.

So as parents, the fun is now just starting.  Brady is starting to respond to touch and sound (apparently he's still ticklish when sedated! ),  although because he's still on a breathing tube they are going to keep him pretty sedated until that comes out, so they don't aggravate his pulmonary hypertension.

Many of you have expressed admiration for how we're doing right now, and don't think we don't appreciate it.  But like I was telling my dad earlier tonight, it's pretty easy to trust God with the stuff that you don't think you can have control over.  It's the little things like getting a house moved, or figuring out what dinner's going to be, or what to wear when you leave the room in the morning that are harder to recognize God's providence in.  For Brad and I, learning how to trust that God's will is being done in every aspect of our lives is a much harder lesson to learn.

In all things we continue to pray without ceasing, and give glory to God who takes care of the big things and the small things.  We thank you all for doing the same.

Brady Update 2

Hi all- if you have gotten any updates from me today, I've probably cut and paste this message-

Earlier today Brady's Blood pressure was low so there was less oxygen going to his Brain and extremities. His lungs are starting to clear up, but there is still a significant amount of "fluff" clouding up the xrays.

He isn't peeing even though they have him hooked up to major league fluids so the thought is that the low BP is affecting urine production, so he is hooked up to a catheter.

Had a pretty severe fever all night. Put him on ice packs and this inflatable cold air bed, which has really helped- he dropped from 103 degrees to 97!


They did a blood transfusion to get more oxygenated blood into his system. He has responded well to that; his temp is down, blood pressure is up and the percentage of oxygen he is receiving from a machine has decreased from 60% to 40%.


A hard day that was made better by prayers, messages of encouragement and reading scripture. It's not easy to see him hooked up to everything but its wonderful to hear that he is making improvements...Brady is NOT a quitter!

We are learning to praise God in all circumstances, and I realize so often during our days that we are so fortunate to be children of a God who controls huge things like Brady's health, to small things like the delicious coffee my wonderful sister-in-law brought us.

Thank you to our prayer warriors.

Xoxo

Psalm 116

¹ I love the Lord, for he heard my voice;
    he heard my cry for mercy.
² Because he turned his ear to me,
    I will call on him as long as I live.

³ The cords of death entangled me,
    the anguish of the grave came over me;
    I was overcome by distress and sorrow.
⁴ Then I called on the name of the Lord:
    “Lord, save me!”

⁵ The Lord is gracious and righteous;
    our God is full of compassion.
⁶ The Lord protects the unwary;
    when I was brought low, he saved me.

⁷ Return to your rest, my soul,
    for the Lord has been good to you.

⁸ For you, Lord, have delivered me from death,
    my eyes from tears,
    my feet from stumbling,
⁹ that I may walk before the Lord
    in the land of the living.

¹⁰ I trusted in the Lord when I said,
    “I am greatly afflicted”;
¹¹ in my alarm I said,
    “Everyone is a liar.”

¹² What shall I return to the Lord
    for all his goodness to me?

¹³ I will lift up the cup of salvation
    and call on the name of the Lord.
¹⁴ I will fulfill my vows to the Lord
    in the presence of all his people.

¹⁵ Precious in the sight of the Lord
    is the death of his faithful servants.
¹⁶ Truly I am your servant, Lord;
    I serve you just as my mother did;
    you have freed me from my chains.

¹⁷ I will sacrifice a thank offering to you
    and call on the name of the Lord.
¹⁸ I will fulfill my vows to the Lord
    in the presence of all his people,
¹⁹ in the courts of the house of the Lord—
    in your midst, Jerusalem.

Praise the Lord.^[a]

Footnotes:

1. Psalm 116:19 Hebrew Hallelu Yah

Helpless

There is nothing that raises your awareness of how helpless we are as humans than having a baby.  It is crazy (and exhausting) to have a baby depending on your for EVERYTHING from eating, sleeping, staying warm and going to the bathroom. There was a point where each of us couldn't do any of that on our own.

Brady is in his second stay at Lurie Children's hospital in downtown Chicago, this time for a severe bout of RSV.  He's currently laying on his hospital bed while a team of doctors has tried to insert a catheter line for almost 3 hours.  He's being sedated and immobilized, so right now he's not aware of any of it.  I however, am acutely aware of the breathing tube he has in his nose and mouth, the various lines that are running through his veins, arteries and wherever else they are sticking needles into him.  And last night when Brad stayed up with him, he was definitely aware of his crying from his pain and discomfort.

Just knocked out, catching up on some ZZZ's

Talk about being helpless.  There is absolutely nothing more I can do for my son then be here to support him.  Meanwhile, he's scared, in pain, and sick.  I wish that I could explain to him that it would pass in a few days, but that it sucks for now, but he's 8 months old- it doesn't work that way.  It's hard to feel so dependent on doctors to take care of my son.  Then I remember that Brady belongs to a God who is so much bigger, and who has all the control over this situation!  I can't sit and wring my hands, wondering what I can do.  The most that I can do is pray, and trust that God is working through this situation the same way that he works through our good situations.

I've listened to some songs to help bring a sense of normalcy to this sterile and cold place, and a song by Chris Rice has struck a chord (ahem, ahem)with me.

Sometimes the way is lonely 
And steep and filled with pain 
So if your sky is dark and pours the rain, then 
Cry to Jesus 
Cry to Jesus 
Cry to Jesus and live! 

In this time, your prayers and love mean more to us than you know.  It is absolutely the most any of us can do!  They sustain us, they give us a sense of peace, they give knowledge and insight to the doctors.

O, and when the love spills over 
And music fills the night 
And when you can't contain your joy inside, then 
Dance for Jesus 
Dance for Jesus 
Dance for Jesus and live! 


Through all of this, we thank God that we live in a city where we have access to excellent healthcare and a wonderful facility.  How wonderful is that?

We'll keep you posted!