Merry Christmas Eve!

Please enjoy this little jig that Jana and the kids have been working on. It takes a minute to load, but is worth the wait. (You'll want to pause the music player at the bottom of the sidebar on the right.)

Send your own ElfYourself eCards

Hurry Up and Stay Put. No Really, Go Home!

11:00 a.m.
Almost! Jana called earlier this morning to inform me that Bridger will be discharged this afternoon- that I need to hurry and get the kids ready to drive into town to pick up her and Bridger. Then she called back. Bridger's been battling diarrhea and the staff is concerned that he may be getting dehydrated. So, they want him to stay overnight. Bummer.

I'm sure it's good for Bridger, but it's always hard to have your hopes raised and then dashed a moment later. It's all good. Tomorrow is Christmas Eve, afterall.

1:45 p.m.
"Okay, really, he can go home." Seriously? I'm not going to get in the car only to have them change their minds again? Jana just called to inform me that he's fine, that the diarrhea has already cleared up, that he can go home! Here's the crazy part. I was the one who informed Jana, and she in turn the staff, that the likely reason he had diarrhea was because they gave him glycerin before leaving the PICU yesterday. A dose of glycerin is standard protocol with most kids who have had lots of pain medication while intubated, since those meds tend to cause constipation. Yet, in my mind I was wondering why they even gave him glycerin, since he had already shown his bowels were in tip-top shape prior to the glycerin. So it seems clear that several people on the cardiac floor didn't read his chart to see that he had been given glycerin before going up. And, as you saw in the earlier update, they were planning to keep him another day because of it. Does this make any sense?

To summarize: They gave Bridger glycerin for constipation he didn't have. They (cardiac unit) were going to keep him for diarrhea that they (PICU) caused. Now, they're letting him go because we reminded them of the former. Honestly, don't you think they would have figured out this chart thing by now? ;-)

I've got to jet to the hospital, before they change their minds!

4:00 p.m.
Bridger's home!

Day Five: Movin' On, Movin' Up!

I wanted to start today out with a beautiful poem my mother wrote for us. She e-mailed it to me the day before Bridger's surgery. It's been so hard for her not to be here during this difficult time, and as she was thinking about this and praying in the temple these words came to her:

THE HEART OF AN ANGEL

Your heart is beating softly

As you slumber on my breast,

My angel child, who came to earth

Not needing any test

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Your heart, as small as a robin's egg

Came needing some repair,

So Bridger, all who love you

Now join in fasting and prayer.

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How I pray for those skilled hands

That I must trust you to,

That this little heart may be made whole

Before this day is through.

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I'm grateful for another healer

Who all broken hearts can heal,

Through the gift of His Atonement -

I know that power is real

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I long for the day I can teach you

In ways that you'll understand

About Heavenly Father who loves you

And the Savior, who holds your hand.

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In my mind I see your valiant spirit,

And in my mother's heart I know,

That all our hearts will grow in love

As we bask in your celestial glow.

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For you are love in its purest form

Fresh from its purest source

And, as your parents, we thrill to know

That you will stay the course.

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You'll never break a commandment,

You'll never break our hearts,

And every day we'll learn from you,

How to do our part.

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How honored we feel, that the Father

Would entrust you to our care.

There's so much that you will teach us,

In the days we'll have to share.

*********************

So slumber on my little one

Sweet peace has calmed my fear,

Your tiny heart will beat strong and true

Next time I hold you near.

***********************

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She captured so beautifully the feelings I felt and made me tear up as I read it. First, because it was so touching and second, because I was so proud of my technologically-challenged mom for actually figuring out how to send an e-mail! We are excited to see her and my dad on Friday.

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10:45 a.m.

Todd's Update: Okay, things are going REALLY well. We're just waiting for word from the Cardiac Unit that they have a bed and nurse for Bridger. He is guzzling the breast milk that we have been freezing for him. His GI system is back in operation, filling diapers left and right. His leg IVs are gone. His right arm IV is gone. His central jugular artery line is gone (procedure caught in picture). His chest tube is gone. His bandage is gone. Pretty soon the PICU staff will be saying, "Bridger is gone!" Yay! Then we can begin to bug the next nurses and doctors about how soon he can go home.

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Oh yeah. I just met David Cook, 2008 American Idol winner.

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He and Chiefs tight end, Tony Gonzales, were holding a spontaneous press event this morning for the kids in the hospital. So of course, Bridger asked me to attend in his stead. Everything was all laughs and high-fives. But when I confessed to David that we had been rooting for both Davids (Archuleta and Cook) during the competition last Spring, I could sense the tension between us. Fortunately, when he learned that our family is from both Utah and Blue Springs, he cut me some slack. The tension disappeared. This obstacle in our friendship seemed to have brought us closer together. We're on good terms again. He's cool with it. Everything's good. We're in a good place. Back to BFFs.

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Each of them signed the legs of a Tony Gonzales doll for Bridger. He seems to like it. Jana is going to be quite upset when she discovers she missed this event. I haven't called her yet. I don't think I will. :-)

1:15 p.m.

He's outa the PICU! Bridger's new address in the cardiac unit is Floor 4, Room 14, Children's Mercy Hospital, Kansas City, MO. His next address will be Home. Isn't that a beautiful word? Home!

The doctor said Bridger's discharge could be as early as TOMORROW, but likely in a couple days. Let's see, 'a couple' usually means two. Two plus 22 is... the 24th! Things are lookin' good. Here's Bridger in his new digs. Still looks and smells like a hospital. Fortunately, though, there is a private bathroom and sleeping accommodations right in his room, so Mom or Dad can stay close. Besides the fabulous health care, however, I would say the next best benefit of CMH is the free high-speed wireless Internet access. Wouldn't you?!

Free at Last, Free at Last!

9:25 a.m.
The nurse and the respiratory therapist extubated Bridger (removed the vent) on advice of Dr. Sommerauer. He had been breathing well on his own all night, showed signs of clear lungs and throat and was very alert. We cross our fingers. Almost immediately, he shows significant signs of improved breathing over our experience on Friday. And without even an oxygen mask, Bridger is breathing fine on his own! We keep our fingers crossed...

10:00 a.m.
The fact that almost no medical personnel have been in the room for the last half hour, hovering over Bridger, is a VERY good sign. On Friday, they couldn't leave his side, right up to the time he was re-intubated. Today he looks and acts almost like our sweet little guy, prior to surgery! Dr. Sommerauer, the daytime intensivist who's worked with him most, has done a wonderful job. We can't say enough good things about our staff.

We just realized that Bridger's parting with the vent occurred at the same time as the sacrament is passed in our ward's sacrament meeting. I'm sure the prayers and faith of our ward members, as well as friends, neighbors and family, have collectively been answered. Thanks to all of you!

They will continue to monitor him and check his blood gases to ensure that everything is headed in the right direction. If he continues this pattern, they will allow us to feed him breast milk sometime this afternoon. We hope they will release him to the regular floor sometime in the morning on Monday.

10:20 a.m.
It just keeps gettin' better. For the first time since we surrended our child to the surgery staff on Thursday morning, Jana got to hold our little Bridge! Truly a momentous occassion.

We are certainly grateful to have had the convenience of the Ronald McDonald house bedroom over the last three nights. I will probably spend one more night there tonight, then we can stay with Bridger in his actual room, once he's moved. This is a picture of the small, simple yet comfortable and functional bedroom that both of us stayed in last night. Thanks again, Mom, for being here for us through this and watching the kids! We hate to see you go home tonight, but we know you've probably seen us through the worst of it.
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11:25 a.m.
It keeps getting better! He's cooing and booing as if nothing ever happened. He's a little hoarse. (Actually quite the stallion, if I may say so.) The nurse just confirmed that, if things go well, he'll go to the floor tomorrow. Who knows? We're hoping he'll come home Wednesday and be our Christmas Eve present.

7:40 p.m.
Jana's Thoughts: Bridger has had a great day! He's acting and looking more like himself again. He even got really mad and started wailing because he was hungry. When the nurse finally got the milk thawed and the bottle to him, he downed 3 ounces in no time. He was able to keep that first feeding down and then breastfeed later - both important steps toward leaving the PICU. His Omi and siblings came to visit on their way to the airport and were so happy to see and hold him. He got a little overstimulated by all the commotion of the kids and needed a little Tylenol to calm him down. Welcome to my world, Bridger! :) They were able to take out the catheter and most of his drips will be discontinued tonight. Hopefully tomorrow he will be on his way to the post-cardiac floor. Dad's hanging with him tonight while mom spends a little time with the older kids at home.

Day Three: Status Quo

Not much to say today. In an effort to be ultra conservative, the doctors have decided to let Bridger take the day off from any attempts at removing his vent tube. They have been administering a steroid (so much for his Tour de France ambitions next summer) to help bring down the swelling in his trachea. They have also performed a couple respiratory treatments to try and break up the gunk in his lung sacs so when they do remove the tube, he will have a better chance of breathing more deeply on his own. So, they're planning to try extubating again tomorrow, Sunday.

My mom and the kids were able to come by today and see the little guy. Jayci has a slightly runny nose, so we took the precaution of having her wear a mask. She was not a fan.

This is Michelle, the nurse that Bridger had last night. One of our favorites. She made Bridger's bed all cute and Christmasy for today.

Jana's Comments:

Bridger is trying so hard to deal with all the uncomfortable tubes and wires and not being able to move. But I can tell he's getting tired of it and it's so hard to watch him cry and not be able to help him. His little eyes get this pained look like, "Mommy help me! I don't understand why you're letting them do this to me!" And the saddest thing is to see him crying but not able to make any sound. His face gets red and his eyes tear up and he flails his arms and legs and looks so sad. It breaks my heart and I can't wait till we can get rid of all this junk and hold him again. We try to touch his head and hands and talk and sing to him but we're so restricted on what we can actually do.

Todd hooked up his ipod and speakers to create a little mood music above his head to listen to so hopefully that helps take his mind off things. When we get close to him sometimes it makes things worse because he gets excited and starts moving around and wants to be held. We're just trying to understand that this is a process and we just have to be patient and hope and pray for the best.

On the bright side, there are so many nice people here doing their best to take care of Bridger and make him comfortable. All the nurses and doctors are doing their best to take care of his needs and take time to answer all our questions and keep us informed. Santa came through the PICU the day of his surgery and brought him a Christmas card and teddy bear. And today a family brought gift bags around to all the patients. Their little girl delivered them wearing a santa hat. Our nurse told us they had a daughter with DS and AVC who was here at CMH for two months after her heart surgery. Unfortunately she didn't make it and only lived to be 7 1/2 months old. Her family started a foundation to raise money for families going through surgery and long hospital stays in situations similar to theirs. And every Christmas they come to bring gifts to all the patients to brighten their day. I was very touched by the way they turned a tragedy in their lives into something positive to help others and honor their daughter and the people who fought with her to survive. You can see their story at http://www.giftsofgabisgrace.org/.

We have met so many families with children with disabilities who are so inspiring to be around. They are all so positive and supportive. I was able to talk to several mothers who had been through heart surgery with their child and it helped prepare me for this experience. It was such a big help and I really appreciate their concern and support. We are so blessed to be surrounded by so many wonderful people!