PICU Update

Emily spent just under 24 hours on the ventilator. Around noon on Saturday they had lowered her pain meds so that she would be awake enough to do the extubation. She did great after the tube came out!!! She was breathing fine on her own and has been ever since!

Her g-tube site looks great too. She started getting fed through her new tube last night, just pedialyte, and this morning they started her on her formula. She is tolerating it very well so far, although she is only getting a teensy bit continuously. So we just need to give it some time and see how she does as we increase her feeds until they are back to normal.

She had a good night last night, and they will probably be moving her back down to the post-surgery floor later today.

Thank you for all of your thoughts and prayers and keep them coming! :)

Surgery Day

Right now, Emily and I are back at CHOP (Children's Hospital of Philadelphia). She had her
g - tube (gastrostomy tube) placed this morning through laproscopic surgery. The general surgeon was able to complete the surgery today after the doctors from Interventional Radiology were unable to finish the first attempt at placing the tube earlier this month. Her colon was in the way that time, but this time, the doctor was able to manipulate and move the organs to get the correct placement.

And during the surgery, they removed the nasty little ng tube from her nose!!!! Wahooooo, her face is free and clear of tubes and tape! She won't need to wear a sock on her hand anymore either. She can touch and rub her face as much as she wants now that I don't need to worry about her pulling the tube out!

The surgery involved making three incisions, one on her right, one through her belly button, and one on the left where the mickey button was placed. This type of gtube is more of a button/valve rather than a tube hanging out of her belly. The incisions are minor and the mickey itself is only maybe 2 inches long or so, so not too big.

She has been in pain and she's been having some trouble keeping her sats up. When she tries to move her legs, she's in pain from her tummy muscles being cut and she gets so upset, she holds her breath! So we've had to keep the oxygen mask nearby and have had to use it quite a few times. But she is getting pain medication as well, so she is mostly comfortable, except when she moves too much.

We are now on the surgery floor where we will stay until Sunday it seems.
Thank you for all of your prayers and thoughts for Little Miss Em - who once again is our little trooper!

Surgery day Update

After I typed the first part of this update, Emily started having the desat episodes (difficulty breathing) more frequently, and not just when she seemed to be in pain. Her nurse, Shawn, noted that she was having stridor (noisy breath sounds) and her breathing seemed labored. He put a call in to the ICU because he felt like she needed to be more closely monitored. I was reading on the couch and was popping up and down every 5 minutes or so to put the oxygen mask up to her face to bring her sats back up. Her numbers would drop in to the 70s or even 60s (They should be in the 90s and ideally at 100%) but would come back up with the mask.

Then, it happened again, but this time as I held the mask, her numbers just kept dropping, her color started to change, she was looking bluish, I called for Shawn who came running. Her numbers dropped even into the teens and he called for the "code". It seemed to take forever until others came into the room, and then in the next minute the room was filled with about 25 doctors, nurses, surgeons, anesthesiologists, the crash cart, the respiratory team, and the social worker who stood with me the whole time talking to me and patting my back as I sobbed off to the side of Emily's bed. They told me she was crying, but I couldn't hear it. It certainly wasn't her normal cry, just a very weak one. I was told she would be going right up to the PICU, and within minutes they were giving her meds and using the oxygen mask and an oral airway device to keep her breathing.

When we got to the PICU, they made the decision to intubate her. They put a tube down her throat so the ventilator could breathe for her. Later I was told that they "think" the pain medicines she was given after the surgery, although she was given appropriate doses for her size, were possibly more than she could handle given her already complicated medical issues. So she will stay on the vent overnight and they will try to wean her pain meds and oxygen levels so that she can come off of it tomorrow morning.

Please continue to pray for our little girl.

Having a bad day?

Then watch this video - you'll be glad you did!
(Just ignore me and my friend talking in the background!)

Also - I tried to shorten the video and put the edited version on the blog, but it has the whole thing on there - (she stops smiling after about 40 seconds or so)

If a picture is worth a thousand words, then a video is worth a Million!!

We're not sure why she's smiling so much (it wasn't really in response to anything we did) - but we don't care. I'm just so happy I got it on film!!!

Mommy and Drew's Big Date

I took Drew to the Boardwalk in Ocean City over Memorial Day weekend. We had a blast just the two of us and it was a perfect day - not too hot or crowded!

The log flume

Waiting to get on the Go-Karts that race under the boardwalk

The dragon roller coaster

The helicopter that wouldn't go up and down

The green jeep - Drew's fourth choice!

I was so proud of Drew for not having a complete meltdown on this ride. We were waiting first in line for the ride to stop. As it started to slow down, another Mom came and stood right in front of us with her two kids. So I said, "Oh, we were waiting in line". And she says, "We were waiting too, but we were in the wrong spot."

And then she stayed there!

So I said, "Well, they'll all get on the ride, I guess."

Unbelievable! I must have been absent the day they made the rule that if you wait in the wrong spot, you get a free pass straight to the front of the line!

Anyway, I didn't make a scene because that's not my style. In the meantime, Drew had already pointed out that he wanted to ride in the fire truck (no one was on it during the previous ride). But as the kids were getting off the ride, one kid tried to get in the fire truck for another ride. So the attendant explained to the parents that the firetruck was broken.

I explained to Drew that the firetruck was broken and asked him which other vehicle he wanted. He said the motorcycles. (There were two sets of side by side motorcycles).

Then, the above mentioned Mom says, "Oh, they want to ride the motorcycles too."

Great. Well, like I said, there was a another set. No big deal. Right? Oh no.

As the attendant lets the kids in to pick their vehicles, this Mom has a FRIEND with two more kids!!!! Guess what they run to? The other motorcycles.

Now Drew almost got there before the younger brother got on the second bike, and the first brother pushed him away!

Drew started to get upset, but I told him it was OK, there was still a "really awesome" green jeep just for him. And he was cool with that. Yay, Drew!

I don't think Drew saw, because it was going on behind him, but the attendant eventually gave in and let that other little boy ride the firetruck. Yes, the BROKEN one!!!!!

I just thought it was ridiculous, but we continued to have a great time and it didn't ruin our wonderful day!

In addition to the rides, we also had pizza, candy and fudge, ice cream (what diet?), and walked in the sand, of course!

Baby Attack!!!!!!

Brenna and Carter attacked me during a recent diaper change for Emily (she's in the bassinet), and Grandmom was there to catch it on film!!

This happens alot. Check out Carter, really getting in there! :)

"Can we help you?"

"Please, just let me help a little!"

"Really, Mom. I want to HELP!!!!"
I did get the diaper changed. Thanks for your "help" guys!