Trick or Treat

We had a restless night last night. Ellie won the final round in the battle against the IV in the head. She pulled a Houdini act getting the socks off her hands and yanked the IV out sometime in the night. The nurse decided to give her some fluids at some point. I noticed this at 4am by which time pretty much her entire head was matted with the sugary goop that leaked out.

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So, at 4am (when I do my best work) I had the pleasure of removing the tape and adhesives holding the IV to her hair and scalp and scrubbed and brushed out the glucose perm she had going on. There’s nothing as heartbreaking as her looking up at me with this bewildered, why are you doing this to me look.

I think she had forgiven me by the time she slipped into her ladybug costume to go trick or treating for her first time ever. They had it all organized where we went around the hospital with a bunch of the other kids from the floor. She hauled in a bunch of loot from stickers to pounds of candy that Colleen and I are saving for her…whoops, sorry, just smudged chocolate on the keyboard.

Click here or on the photo for a few big pictures from Trick or Treating.

Happy Halloween everyone!

-Ken

Kickin’ it in da Crib

It’s been one week since the surgery today and Ellie’s doing pretty darn well. Dr. Marx looked at us this morning and said, “You know, honestly, we’ve seen something positive every day.”

crib1.jpgClick here or on the photo for a couple of larger shots from this morning.

The milestones Ellie needs to achieve before we can take her home are:
– to be off the oxygen and still have a high oxygen saturation in her blood
– to not be taking any meds through the IV
– to be feeding normally like she would at home
– to not have much fluid on her lungs

Well, they’re weaning her off the oxygen today. She’s not on any oxygen assistance right now and her sats are ok. We’re giving her all of her meds orally today. She’s not taking much of her formula, but she’s putting away eggs, chicken, pizza, macaroni and ice cream like a chip off the old block. On the downside, her chest x-rays are still moderately cloudy, but she’s on heavy diuretics to try to move that fluid, though.

Hopefully we can start to think about home sometime this week.

– Ken

16 month Birthday

Ellie had a good night last night. Slept well, so Ken actually slept as well. The new baby in the next bed was taken to the nurses’ station so that helped. Over at the Devon Nicole House I actually got the longest night of sleep I have had in awhile. Thank goodness for the clocks going back.

Ellie has been a bit more unsettled today. Maybe because she is becoming more aware, and since she isn’t on as powerful a pain killer, she has been more uncomfortable.

This morning’s X-ray showed that Ellie still has fluid on her lungs. It isn’t any worse than yesterday but it really isn’t any better either. They are keeping a close eye on this. All of her blood work looks good. They are reducing her oxygen to wean her off it and yet she still has good oxygen saturation, so that is good.

Mom and Dad left awhile ago. It was nice having the support and Ken and I even got to get away for a couple of hours last night. I think that we are as mentally tired as we are physically.

8 East is treating us well (I always did like the east coast) and we are hoping for a calm day.

Happy 16 month birthday Ellie Beth.

-Colleen

Go East Young Lady

Ellie’s out of the ICU!

moving1.jpgThis photo shows her on the move. Click here or on the photo for another picture of Ellie.

She’s been off most of her IVs and has been doing so well that the doctors decided to move her to “The Floor” tonight. The Floor is the cardiac step-down unit officially called 8 East. It’s adjacent to the CICU and more like a regular hospital ward where we’re sharing a room with another patient and the nurse only comes around every so often. We should be here until we go home now. This is a big step.

Ellie’s been awake all day and in good spirits. She wasn’t even that upset when they stuck a new IV line IN HER HEAD! They couldn’t find a strong vein anywhere else so they jabbed one popping out in her melon. So our new job is keeping a 16-month old from pulling a tube out of her noggin that’s dangling right in her eye.

She still has some fluid on her lungs, which is a bit of a concern, her tummy’s been upset and she has a little grunt when she breathes, but things are definitely heading in the right direction.

All of this is good for Ellie, but it’s getting tougher for us. She needs constant attention so she doesn’t yank out any lines or mess with her wounds. She also hasn’t been sleeping well because of her tummy. After a week, fatigue is setting in on us, too. But, she’s on Zantac now and we’re in a quieter room so we’re hoping for a better night (cue the wails of the 13-day old sharing the room with Ellie as I type this sentence).

Thanks for everyone’s continued support and prayers – they’re being answered. For those of you going to church tomorrow, please pass on our deepest gratitude to all of the prayer groups who’ve included Ellie in their thoughts.

-Ken

Cuddles all around

Ellie has come a long way today.

She has been able to have cuddles with Mom and Dad and has been giving Sandy the giraffe cuddles non stop all day.

The morphine stopped early this morning and she has done really well off of it. She has been on Tylenol for the pain and low grade fever she has had off and on all day.

They have removed a bunch of her lines and there are only three things left on the screen. Heart rate, breathing rate and O2 levels. It is so weird seeing a once full screen almost empty.

As they stopped the sedatives last night and she became more awake, she was inconsolable. Ellie was crying and upset and there was nothing I could do to make it better. I was so scared she was going cause herself more pain or even “blow” something out. That was the hardest thing I have seen or had to deal with so far. I just wanted to make things better and I couldn’t.

It was such a relief to see her today, even going off the morphine, in such good sprits. She even gave us a few smiles and even tried to chat with us. Of course the lines that are still in are drving her crazy and her happy hands have inspected and picked at every one of them.

Yup, we are beginning to have our old Ellie back and that is the best thing we have seen so far.

-colleen

Mummy’s Lap

How’s that for progress?! There’s no better medicine than mummy cuddles. Click here or on the picture to see two larger photos from this morning.

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Surprisingly, Ellie had a nice calm night. I walked Colleen over to the Devon Nicole House last night so she could get a good night’s sleep and when I got back, Ellie was awake and hungry. I got to feed her a bottle. I know it’s silly to get emotional over such a simple thing, but just being able to feed her got me a little weepy. So imagine Colleen’s delight when she got here this morning and the surgeon, Dr. Pigula, said, “Why don’t we get her out of bed.”

She’s off most of the medications she was on, including the morphine. So, she’s not even dopey. She still gets some Tylenol for the pain. The line in her jugular came out last night and more come out today (see scorecard below).

Everyone’s real pleased with how things are going.

– Ken

Spaghetti Bowl Scorecard
X
Stomach Drain
X
Oxygen to the brain monitor
X
BIS (wakefulness)

X

Ventilator (breathing tube)

X

Jugular line (for giving medicine)

In

Heart Rate wires
X
Left Atrium line

In

Right Atrium Line

In

Pacing Wires
X
Chest tube

In

Arterial Line (right wrist)

In

IV (left wrist)

X

Catheter
X
Thermometer line

In

IV (left ankle)

In

Oxygen Saturation Monitor

X

Blood Pressure Cuff
X
Saran Wrap Eye Patch

Standby Not Ventilating!

The breathing tube’s gone and Ellie’s doing it all by herself now! …well, almost.

They had to let her wake up to take out the tube and she came off of it ornery, kicking and crying. Her throat is really sore where the tube was down. She’s not happy about that or being hooked up to the remaining spaghetti, but it was reassuring to hear her tell us off.

1.jpgHere are the latest photos (again, she looks loads better, but these do show her chest uncovered). Notice that the spaghetti bowl is getting a bit empty. I’ll update the scorecard in the morning.

Seeing her so miserable has been just about the hardest thing yet. They’ve given her something and she’s resting now, though. Looks like it’s gonna be a restless night. Let’s hope she can keep it up!

-Ken

Lose a noodle, gain a noodle

We lost some noodles, and gained a noodle. The left atrium line and chest tube are out now, but a new catheter had to go in. She hadn’t had a wet nappy since they took it out.

Click here to see photos of the spaghetti bowl before things started coming out. Viewer discretion is advised because it shows Ellie with her chest uncovered.

More real soon as we expect the breathing tube out soon!

-Ken

Again, if you’re playing at home, here’s a score card to keep track of what’s out.

Spaghetti Bowl Scorecard
X
Stomach Drain
X
Oxygen to the brain monitor
X
BIS (wakefulness)

In

Ventilator (breathing tube)

In

Jugular line (for giving medicine)

In

Heart Rate wires
X
Left Atrium line

In

Right Atrium Line

In

Pacing Wires
X
Chest tube

In

Arterial Line (right wrist)

In

IV (left wrist)

In

Catheter
X
Thermometer line

In

IV (left ankle)

In

Oxygen Saturation Monitor

In

Blood Pressure Cuff
X
Saran Wrap Eye Patch

The Spaghetti Game

Yesterday we were playing the numbers game. But now that the doctors are happy with the numbers we’re playing the spaghetti game. When Ellie first got settled into the ICU, her bed was a big old spaghetti bowl of tubes and wires. Every tube and wire that comes out now is progress.

Yesterday they removed the head bands that were measuring oxygen going to her brain and her wakefulness. Last night they took out the tube draining her stomach and her catheter that was draining urine.

Today, a surgeon is going to take out the line going into her left atrium and her chest tube that’s draining fluid from around where they did the surgery. The left atrial line coming out is the big news. Her left atrial pressure (which they get from that line) is still reading a bit high. But since everything else is good, they want to stop focusing on that number. So much so, that they’re yanking it out as we speak.

The next steps will be cutting back her sedation and getting her off the breathing tube.

Colleen got some sleep in the CICU last night and I had a room at the Devon Nicole House (more on that later today). I picked Colleen’s parents up at the airport this morning. They got in fine and are here with us at the hospital now.

We’ll update again this afternoon with a photo since Ellie should be awake and alert soon. We’ll also keep you up to date on the Spaghetti Game as more noodles go.

By the way, we love your postings! Every time we run out to the lounge to get online, we’re going, “Eww, Eww, who’s posted?” Thanks everyone!

-Ken

Be a tortoise…

…Slow and Steady, Ellie Beth, Slow and Steady.

So far so good.  Ellie’s temp has gone up a little so she has an ice pack on her head to bring it down.  What with being a little puffy still and the ice pack, she looks like she has a bad hangover.

Besides that things are going well.

She has come off the paralysis drugs and is already trying to get those feet kicking.  They still have her really sedated right now and want to keep her that way through the night.  Even with all the drugs, we got the joy of seeing her open her eyes for a few seconds today.  Seeing her move makes it seem more like we are getting Ellie back.

The plan is to go through the night monitoring things.  If everything stays steady tonight they will think about pulling out her LA (left arterial) line tomorrow and maybe start weaning her off the ventilator.

After all that, then they will start waking her up.

Slow and Steady.

-colleen