Wednesday, October 1, 2008

Eight long hours

WHEW!! I'm pooped, and it's only going to get worse! But we're in good spirits and ready for tomorrow!!

First of all, let me tell you all the specifics about tomorrow before you wade through my wordy post, complete with pictures of our super-long day. (**All times are Central Standard Time, so if you're on Eastern time, add an hour if you would like to pray at the exact time!**)
  • Benjamin can't eat past midnight.
  • We have to be there at 6:30 a.m.
  • We will go back with him and meet the surgical team, including the anesthesiologist and nurses. (We met the surgeon today.)
  • They will take him from us at 8:00 a.m.
  • It will take roughly an hour to sedate him and get him prepped for surgery. He will have a central line (for food and medicine), an IV, and two drainage tubes in his abdomen. (They said it could take up to four hours--yikes--for this to take place, but hopefully only about an hour. Part of me thinks it will take longer than that because, as you'll read later, it was *very, very* difficult for them to draw his blood today b/c his veins are tiny and hard to find.)
  • Depending on how long it takes them to get prepped, surgery will start at approximately 9 a.m. (I will have Internet access and plenty of time on my hands, so I'll post when they let me know surgery has started. While we wait, they will call every hour to hour-and-a-half into the waiting room to update us at different checkpoints.)
  • If the surgery starts at 9:00, then it will most likely be finished at about 1:00 or 2:00. We will meet with the surgeon when she finishes.
  • They will move him upstairs to the PICU (Pediatric Intensive Care Unit) and we can see him about an hour to an hour-and-a-half after the doctor comes to talk to us.
  • He will most likely be in the PICU for one to two days. He may have to stay longer if there are complications OR if there is not a room on the floor available for him.
  • One of us can sleep on a lovely fold-out chair (you know the type) in the PICU room with him. The Ronald McDonald House is still full, but there are "Sleeping Rooms" right near the PICU where one of us can sleep. These are "rented" out (free) from 9 p.m. to 9 a.m. to those who need it the most. Seeing as we don't live here, we should get a room. It's just a room with a twin bed and a bathroom with a toilet, sink, and shower. We can switch out back and forth depending on who needs more sleep. If we do not get a Sleeping Room, there is a Family Lounge with about 10 of those fold-out chairs. Regardless of where we sleep, there is a kitchen (with a fridge and microwave), a laundry room (with detergent and free of use), and a Ronald McDonald Family Room (with free snacks and light meals).
  • Once Benjamin is moved to a room on the sixth floor, we will both be able to sleep in his room on a pull-out couch.
  • We might be able to go home as soon as Sunday or Monday, but really there's no way to know yet.
Onto the pictures!!

Here is my baby last night when I woke him up to feed him and move his bed into the living room.

A few pictures before we left the hotel.

This picture is for my mother, who ate at a Ruth's Chris in Hawaii when we went in 2005 and still talks about how good the steak was. :)

Daddy and Benjamin waiting. (Story of our day!)

Getting an echocardiogram done. These are old hat by now. It's just like an ultrasound of his heart. Complete with swooshing sounds and cold gel on his skin.

Waiting to be weighed and measured.

Weight=12 pounds, 8 ounces
Length=26.5 inches

Getting an EKG done. We've had several of these done, too. It looks kind of scary but it's really just a bunch of tape with wires. They have to hold really still, and he did a great job. They had a cute baby mobile with classical music and flying birdies up above him. After this, she took his blood pressure and did an oxygen saturation level on his foot. (These are all things we get done at the cardiologist every time we go.)

Gulp. How precious is this picture?? I call it "Safe in Daddy's Arms." Kind of reminds me of how our heavenly Father holds us, and how there is no safer place to be.

Smiley boy.

ZONKED (He had just eaten.)

We met Tina, the nurse, and she was awesome. She told us many details that we needed to know. Then we met Kathleen and she took us on a tour. She also showed us some pictures of what to expect right after the surgery. We then had about two hours before the surgeon was supposed to be out of surgery with another patient and able to meet us. All we had to do was get a chest x-ray and get some blood drawn.....


We waited over 45 minutes to get a chest x-ray. They forgot about us. ARG. It wasn't supposed to take more than ten minutes, but we didn't know. Meanwhile, Benjamin was exhausted and Matthew and I were starving. And we still had to go get blood work done on another floor...

Oh, the blood work. Poor little guy. We didn't have to wait that long, but how it's set up kind of stinks. There are three stations in this tiny room, where up to three kids are getting stuck at the same time. And not just babies, but older kids, who *know* what's going on and cry, which causes babies to cry. And not just that. But they could not get a vein on Benjamin. They tried the left arm. No luck. Lots of tears and screaming. Then they tried the right arm. More of the same. Matthew was holding him and I was hovering. They ended up getting some blood finally. (But stay tuned b/c the blood saga does not end here unfortunately.)

We went up and told the nurse that we were finished but did not get a chance to eat yet. She said that we still had 60 to 90 minutes before the surgeon would be finished, so I fed Benjamin and we went to eat lunch.

Here we are on the way to lunch at a cafeteria to eat some healthy food.

Yeah, right. Those of you who know me knew I was just kidding. As you can tell, Benjamin was SACKED out. (ZONKED III) This nap lasted a better part of two hours, which was soooo good for him!

So then we went back upstairs and met the surgeon, Dr. Karla Christian. She was great. (Most of the info that she told us is up in the beginning of this post.)

Then Tina came back in and told us that they did not draw enough blood (and by now they had discarded what they had drawn), so we had to go BACK to the lab. Ugh. Dread. Rightfully so.

Benjamin was still sleeping in the Hotsling, so we just left him in there to try his left arm. Again. POOR THING. It did not go well. Like the two previous times, they were able to get a little bit of blood to come out but not enough to fill the vial. He's wailing, and screaming, and so are the other two kids in there. So I had to take him out of the sling and we tried the right arm. Again. More tears and screams. I was holding him as firmly as I could. Evidently the vein kept rolling and three women were trying to get it in. Finally, as I'm sitting there with my eyes closed praying my head off, it worked.

A little after eight hours after we arrived, we left. But our little guy is a trooper and he's no worse for the wear. He was smiley and giggly and ate like a champ. He's been napping for two hours. We need to wake him up and bathe his chest with some special surgical soap.

Ooh, ooh!! My last picture is of Belmont University, which we passed on the way back to the hotel. If you can't read the sign that's hanging, it says, "2008 Town Hall Presidential Debate." That's right, peeps, Senators Obama and McCain will be here, right down the road from me, on Tuesday, in the second of three presidential debates. How cool!

My favorite part of the day hasn't even happened yet. My lovely cousin Carol and her new husband Justin (who got married just over three weeks ago) are bringing us food tonight. Two words. Starts with a Cheesecake. Ends with a Factory. I'd better go check the menu online.



lots_of_love_four_kids said...

Praying for you and your sweet baby boy! ( We also have a Benjamin... fantastic name!!! :)
Try and get some sleep tonight- and know that we will be praying and checking the blog!!! HUGS!

Lillie's Mommy said...

I'll be praying for you tomorrow. I can't even imagine what it's going to be like. God Bless All of You!

Grace said...

I'll admit Angela, I fell for it and wondered what the heck you were doing eating healthy food. I was relieved to see the nachos with fake cheese (yum!). And of course, I love me some CF too - no surprise, huh?

As you know, you are all in my thoughts and prayers and will continue to be in the upcoming days. I look forward to your updates and so appreciate you keeping everyone posted.

Amber said...

Angela, praying hard. I just love that little man! He's so cute, he could be on a calendar...Mr. April...

I can't wait to get the word tomorrow! Stay strong, Mama, call your eldest while you wait, and get some rest tonight, if you can. By the time I leave work tomorrow, you should be headed to recovery, at least!! YAY!!

Kellye, Chad, Hayden, and Sebastian said...

Angela....praying is an understatement. You've been on my mind all day today. I hope that things go smoothly tomorrow and QUICKLY. I pray that you'll feel the Lord's arms wrapped around you tightly and Benjamin! Stay strong and know that there are TONS of people with you on their heart!!! May the Lord do his work!!!!

Terri said...

Many prayers for Benjamin and the entire family tonight, tomorrow and in the upcoming weeks. Cameron's heart day was almost 2 years ago and I remember it like it was yesterday.

Denise <3 said...

Oh I just love seeing Benjamin's smiling face! He is just precious, as you are well aware =0)Please know that I am thinking of you, Matthew, and of course Benjamin through all of this. My prayers are with you!!! Hugs!!!

Erica said...

He is so precious. Love the sleeping pics. Great lunch.....for energy atleast! Lots of prayers coming your way.

Anonymous said...

The pic of Benjamin with your husband brought me to tears. What a wonderful gift you give each other every day :) Also the irony of the surgeons name did not pass my notice. I think of it as a message to encourage faith and peace in your heart. Bless you and I'm thinking of you all.
(Its not letting me sign into my blogger account so this is Jamie)

~heather~ said...

I'll be praying hard for all of you. Stay strong, you all can do this!

Jen said...

Just wanted to let you know that I'm thinking of you guys and sending good thoughts your way. Benjamin's beautiful, and seems like such a tough little guy! - JennaW (from BZ)

Megan Bowman said...

Good luck tomorrow! Praying for all of you!

Megan (azmom)

The Butcher Family said...

Praying for you this morning, beautiful boy!!!

Love & heart hugs~ Rebecca

Lindsey (BZ) said...

Your family is in my prayers this morning. Benjamin is a trooper. Love all the pictures. (He looks every bit as tall as Andrew is!!!)

Elizabeth said...

Oh Angela! YOu are so strong! I prayed over and over last night and this morning. Please let us know how it goes!

Christia said...

Benjamin is such a sweet boy. I'm praying really hard for you! Hugs!

Joyce said...

Praying for the surgeon and all of you! Love you so much!

Sara said...

Angela, Matthew, Andrew, Benjamin, we love you all so much. Stay strong today and I will sit here and wait for the wonderful news that it is over and that Benjamin is happily in recovery.


Dani said...

Our Kids are tough! You will be suprised to see that beautiful Smile resurface Much quicker than you think! Our Children are amazing and recover so quickly and I know Benjamin will too. It will not be long before this surgery is just a memory you have and the reminents of a scar where God guided the Drs hands to fix him. It is an external reminder that through him we can do anything. Stay strong I know all too well how hard it is to pass our baby over to the drs but have faith soon they will be putting him back into your arms!
Dani in CA

Jill said...


Benjamin is such a doll. I love the picture of Matthew holding him. You are all in my thoughts and prayers. I will be anxiously awaiting updates!