Thursday, February 28, 2013

Looking good

We won't get official word until tomorrow morning, but the doctor told us to prepare for Tess' PICC to go in tomorrow afternoon! That still puts us on an estimated departure date of Monday. The key word there is "estimated."

And here's a picture of Tess playing earlier today. We had visitors for about 90 minutes and she played the whole time!

Notice no oxygen hose!

Our view

6th floor, looking south towards Pikes Peak in the distance.
[click to see a larger version]

No news is good news

Our regular team of doctors just stopped by for the morning briefing. Tess continues to look and feel better. Today we're waiting for her blood cultures from Tuesday to come back negative for the bacteria (total of 48 hours). We'll hear about that at about 4:00 pm today. If they remain negative until that deadline, then Tess will get her PICC line tomorrow afternoon.

The PICC is the thing that will eventually allow us to go home. With that inserted, it'll allow Tess to receive her antibiotic treatments at home (by a nurse at first then from us).

The overall timeline: After speaking with our lead doctor yesterday, a PICC insertion on Friday would probably mean us going home on Monday. Let's hope so!




This just in

This just happened...


We haven't seen this smiling baby in over a week!

Still waiting on the doctors to make their morning rounds. I'll post the medical news after they visit.  

Wednesday, February 27, 2013

Entertain me

It's tough when we can't pick up Tess and do all of our typical fun activities. We've been able to hold her on our laps since last night for feedings (and we've been encouraged to do that a little more), but we've also had to think creatively to keep her occupied...

Puppet show starring Mom in the roles of Clown and Lady Bug. 
Original music and lyrics also by Mom.

Listening to the Twins' spring training game on Mom's iPod.

Bacteria is a stupid jerk

Tess is back on breast milk for her main diet! She was a champ last night gobbling up everything that was offered (2 oz at 6 pm, 3oz at 9 pm and 4 oz at midnight). She spiked a fever at about 3:00 am and lost her appetite, but then ate all 4 oz at 7:30 this morning. The docs aren't super worried about the fever, but they're running a few additional tests this afternoon just to make sure it's not something they overlook.

We were looking forward to Tess getting her PICC line tomorrow morning (which will make giving her the antibiotics much easier), but that'll be delayed. Her blood cultures from Monday were clear for 24 hours, but then grew some bacteria last night (they need to be clear for 48 hours). So now we're waiting on her cultures from Tuesday to be clear for the full 48 hours. So the earliest her line will go in is Friday morning which means we're here for at least a few more days. It's really just waiting at this point.

Tess is slowly getting back to her normal self. She was playing a little bit yesterday...

 Her favorite activity is to to pull the oxygen hose out of her nose!

I can't remember if I've mentioned our rather sweet room - sofa, two recliners, lots of space. Our 6th floor window looks south so we get lots of sunshine throughout the day.




Tuesday, February 26, 2013

Milk!

Tess just got her first taste of breast milk in a few days. The only bummer was that she was only allowed an ounce (she normally has 4 or 5 ounces per feeding). If that stays down and she feels ok, she'll get two ounces in three hours. This kid loves her milk so the wait may be tough!

So tasty!

I want more!

Ok, how about the cute approach: Can I have more, pretty please?

How did this happen?

We've been asked a few times how little Tess got the staph infection. We'll never know, but there are a few theories.

The only internal thing done during her cast procedure last week was an arthrogram. They inserted a needle into her hip to inject some dye so that her soft bone tissue would appear on the x-ray. That would allow the doctors to make sure her bones were set correctly when in the cast.

The abscess grew right around that incision point. Luckily, the staph decided to grow in her muscle tissue and not in the hip. It's much easier to drain and clean muscle than it would be with joints. Anyhow, the staph could have come from the needle, or Tess' skin, or perhaps it was already in her blood and just needed a rallying point to start causing problems.

Tess is a rock star. I know she's getting bored laying in the hospital bed, but it sounds as if we'll get to try holding her later today, as well. Personally, I'm getting really good at dancing for her entertainment (Hokie Pokie, Head-Shoulders-Knees-Toes, Five Little Monkeys, you name it and I've danced to it).

 One of my favorite photos from last month. 
Looking forward to having this cutie back soon!

Settling into a routine

Our first wave of doctors have passed through this morning. Tess is back to sleep.

We're in a bit of holding pattern now and waiting on a few things. Updates so far today:

1. Tess' inflammation markers in her blood are getting better. Still very high, but coming down. Same with her white blood cell count.

2. Dr. Booker redressed the incision on her groin and pulled the little drain tube. He said it's looking good.

3. Tess' stomach is still distended, but it sounds as if she'll get to try an ounce of pedialyte or breast milk later today. She's peeing and pooping and we'd love for her to keep that up.

4. They'll be inserting a picc line into her arm at some point soon. It's a catheter that will go in through her arm and up into her chest to deliver antibiotics. It's a bit more stable than your regular IV and can stay in for much longer. But they can't do that procedure until the bacteria is out of her blood. So again, we're just waiting.




Monday, February 25, 2013

Free haircuts

Tess started her blog as a place to post fun news and photos from our days hanging out, so I figured I would share a fun little story from today.

The Children's Hospital is amazing when it comes to how comfortable they make families. Case in point: Today a local salon visited to give free haircuts, styles, makeup and massages to the parents.

So I went.

Yes, I was the only man that took them up on the offer and we had a blast. I'm caught up on The Bachelor and what brands of makeup are the best and the lady put some sort of goop in my hair to make it trendier. I am looking forward to washing it out.
-Andy

p.s. And before you ask, yes, my eyeliner and nail polish look amazing.

Bacteria in the blood

Each afternoon they've been pulling a blood sample from Tess to test for the bacteria causing the infection. We need to wait until those tests are clear of the bacteria to continue with certain procedures (like a picc line instead of IVs in her hands). The blood sample from yesterday still shows bacteria, so we're still waiting on that front.

In other news, the specific staph strain has been identified and it's not the really bad one. It's one that responds well to antibiotics.

We've moved out of the PICU to a regular room (6th floor for anyone that knows Children's) and I have to say it's a rather deluxe room. Two lounge chairs, a couch, our own bathroom, shower, Xbox and ESPN.

The doctor that will be treating Tess going forward (along with Dr. Booker) stopped up to visit for a while just now. At this point, the antibiotic treatment will go on for a while (2 weeks or longer) and we'll be in the hospital for at least 3 more days, perhaps longer, but that's something that will be determined based on how Tess responds to everything.

She's not allowed to have any more breast milk yet due to her swollen belly. Although she pooped three times earlier today so hopefully things are moving along.

It's a bad infection and this baby has been fighting hard. She's having a well deserved nap at the moment. 

Infectious disease doctors

Ok, the Irish accent doctor just came back with his colleague. I told him that I just finished typing a paragraph about him in Tess' blog and that his accent is perfect for an infectious disease doctor's aura. His colleague started cracking up and said, "You're close! He just got back from doing research for 6 weeks in Peru and Guatemala, not Africa." Awesome.


A longer update

A little detail on where we're staying: The PICU rooms are filled with tons of really fancy looking medical equipment. They're too full to have our own bathroom in the room. It's a little like my dorm at Wisconsin, but with cute nurses walking around. There's a nourishment room around the corner from our room with beverages and snacks (graham crackers, Jello, ice pops). The PICU patients each have a dedicated nurse who sits immediately outside our room. And unlike the regular rooms upstairs, we have a sliding glass door instead of a regular solid wood door. Sort of like the stereotypical ICU hospital room you'd see in the movies. There's a bench that converts into a slightly-wider-than-twin bed.

Anyhow, the staff wanted us to get some sleep so they didn't bother us throughout the night. I woke up at 8:30 and walked down to use the bathroom. When I got back to the room, Tess was awake and looking at the door. I walked over to her and she followed me with her eyes. I smiled and then she smiled. We hadn't seen that smile since Thursday.

Way more alert this morning, still groggy, though.

Several things happened throughout the night. First of all, Tess' abdomen became very rigid. The joy of being in the PICU is that the x-ray machine comes to you, so while we slept (seriously, I didn't hear anything) a team x-rayed Tess' stomach and intestines and didn't find anything too alarming. It's just some irritation that should go away if left alone. But for that reason, she's not allowed to have breast milk for a while. It's back to being fed by the IV. 

They also thought that she may be having bladder problems since she hadn't peed in many hours. A quick ultrasound showed that her bladder wasn't too full and that a catheter was not needed. She woke up with a wet diaper so that was good news. 

The mornings are the busiest time here. Several doctors making their rounds all with a specific focus. Dr. Booker was our first visit today. He redressed the bandages on Tess' incision. It's being held together with two loose sutures with a little tube to drain any additional puss. I successfully looked at it without passing out. He'll be back again later today to check on us. He asked us to try moving her and holding her a bit today to see if she's still uncomfortable when we move her legs. 

Our next visitor was the infectious disease doctor. Seriously, we've hit the big time here. He spoke with a partial Irish accent (County Cork) which I think reinforces the aura of an infections disease doctor. I can picture him wandering Congolese jungles looking for the source of Ebola. Just to review, Tess has two things that we're worried about: (1) The swelling in her groin and (2) the blood infection. The swelling has been treated and it's being monitored. The blood infection is the bigger deal at this point. As I typed yesterday, the lab has been able to identify it as a staph infection and they're close to getting the specific strain. When we know that, Tess will go on a specific antibiotic to kick the shit out of it. The crazy thing is that it's a timely process and it looks as if we'll be spending a week here while that antibiotic runs its course.

Maybe one more night in the PICU and then up to a regular room. We'll know more about that later today. As always, I'll post as soon as I learn anything worth sharing. 








Sunday, February 24, 2013

Meal time

Making us proud...


Still resting

This little bugger has a lot of sleep to catch up on. She's been sleeping almost constantly since she got back to the room to recover from surgery. We don't have any exciting update other than to say she's doing well and we're waiting for her to become a little more alert so we can try feeding her orally.

Thank you to everyone for all of the prayers and well wishes. Denise worries every time I read a comment or an email or a text because I just keep tearing up!
-Andy

Tess is back

Tess just arrived back to her PICU room. She's allowed to recover up here since they've got all of the same staff and equipment as they would have in a regular recovery room. It's nice to have her back!

So we've got good news:

1. The MRI confirmed that there wasn't anything weird in her hip joints. Dr. Booker opened up the abscess (which was contained to muscle tissue) and drained 5 milliliters of puss. Our nurse, Robyn, gave me a visual of what 5 ml looks like and it's almost identical to the size of my pinky finger. That's quite an amount to come out of a 13 pound baby. That was definitely what was making her sick. The muscle fiber is cleaned out and the incision was left partially open so it can drain over the next 24 hours.

5 milliliters was no joke.

2. Tess' blood cultures that started growing in the lab yesterday came back positive for a bug. This is also great news because once that bug is identified, they will know exactly which antibiotic to prescribe. We'll learn more about this as the bug continues to develop in the lab. We expect a definitive answer on that tomorrow. 

We'll be spending the night here in the PICU and hopefully move up to the regular floor tomorrow. The PICU is great because we have a dedicated nurse, but the regular floor is a bit quieter and a nicer room for Tess' parents!

Our little mummy trying to keep warm as she recovers.

Our nurse was just saying that Tess' pain should be quite a bit less now that the abscess and pressure has been removed. They'll also keep her on pain meds to keep her comfortable, of course. We're excited for her to be a little more alert to try giving her some breast milk from a bottle. 




Into the MRI

Ok, we left Tess with the doctors about 10 minutes ago for her MRI and then into the OR. A few pictures that I think Tess will enjoy seeing in a few years...

 Sneaking a peak at her monitor while she was awake. She loves anything with a screen!

 Wagon ride from the PICU down to radiology for the MRI.

She's very calm when laying still, but in obvious pain when being moved. 
She really enjoyed the motion of the wagon, though.

MRI update

Just spoke with Dr. Booker. He's going to aspirate the swelling for sure to see what sort of fluid is in there. The MRI is going to be used to see what else is going on in the hips and general area first. Tess will be out for a couple hours total with MRI, aspiration, testing the fluid, figuring out if they need to open up the hip to drain it, etc.
-A


MRI then ???

Tess is going to head in for an MRI in a little while. She'll be under general anesthesia to keep her perfectly still during the process. It'll take about 45 minutes. After that, they'll keep Tess under anesthesia while they read the results.

Depending on what they see in the MRI, we could go a couple ways. An OR will be ready and they may take Tess in to aspirate the swelling (meaning they'll stick a needle in the lump to sample what's in there).

And then depending on the results of testing that fluid, they may need to open up her hip to drain it.

So it all depends on the MRI.

Dr. Booker is here and they've rearranged the MRI schedule and OR schedules to accommodate Tess. We're extremely impressed with Children's. 
-Andy

Swelling

We were just visited by a regular on-duty surgeon and then the ortho surgeon to take a look at the swelling on the inside of Tess' left groin. It's definitely gotten larger in the past couple hours and seems to cause her pain when touched.

The first surgeon said it doesn't seem to be an abscess (meaning that it's filled with puss). The CT scan isn't as detailed as they want, so we may be heading for an MRI in a little while.  The MRI would give more detail, but it would also involve putting Tess under anesthesia to keep her motionless since it's such a long and loud procedure.

Denise is getting some sleep and Tess is loving watching the monitor with her vitals. It's way more TV than she's watched in her life! But seriously, she's calm right now. The Tylenol, Motrin and antibiotics are evidently doing something since her pulse now hovers around a regular rate (120s when sleeping, up to 160 when agitated versus 220 when agitated several hours ago).
-Andy

Tess takes a break from her blog

Ok, gang. Tess is resting so now so she gave me permission to post on her behalf.

I can't remember what I've told to each of you individually, so here's a brief rundown:

Thursday, 7:30 am: Tess' spica cast was put on (see some of her past posts). She was very upset with it (rather inconsolable at certain points on Thursday night).

Friday morning: Dr. Booker (our orthopedic doc) made some modifications to her cast to make her more comfortable (see past posts).

Friday, 4:00 pm: We were discharged from the hospital and got home at about 6:00 after stopping to fill Tess' prescription for baby valium.

Friday night: I was on Tess duty while Denise tried to get caught up on some much-needed sleep. Tess was waking up about every 20 minutes and then dozing back off. She didn't eat anything from 8:00 pm on Friday until 4:00 am on Saturday (very rare for a baby who normally loves meal time!).

Saturday morning: Tess was extremely lethargic and not interested in taking medicine or eating. She'd get very upset when being moved.

Saturday afternoon: Denise suggested we take her temperature during a routine diaper change. It was over 104 degrees. That warranted a phone call to Dr. Booker. He met us at the ER at about 3:00 pm and the first thing he said was, "The cast is coming off. I don't think it's causing the problems, but it's one thing we can alleviate from wondering about." He cut off the cast and Tess' skin underneath looked just fine. We will be meeting with him sometime soon to discuss Tess' hips (probably this coming week).

Saturday evening: We were admitted into the hospital for what appears to be at least a 2-night stay. At some points we had 10 or 12 people in Tess' room trying to figure out what her little body is fighting. Medication has brought her temp down thankfully, but her pulse had been hovering around 200 for a long time. She's been through a battery of tests (blood, spinal fluid, urine, more blood work, etc) and so far it's stumping the doctors.

I went home to let out Keillor at about 11:00 pm. Meanwhile Tess and Denise were relocated to the PICU (Pediatric Intensive Care Unit). I arrived back at about midnight just before they wheeled Tess down to the CT scanning room. One of the doctors noticed that her left groin area has expanded since she's been here so they wanted to get that checked out (so results yet). The focus seems to be on her hip/leg areas since she really gets upset when anyone touches those areas.

Within the last hour, she's been alert and watching us as we visit with her. She's also a big fan of watching the monitor that displays her vital stats. The Motrin has brought her fever down and she's on a powerful antibiotic.

She just dozed back off a few minutes ago. Here in the PICU we have a dedicated nurse that monitors Tess. She sits right outside the clear glass door of Tess' room. Both Denise and I are going to try to get a little sleep while Tess is doing the same.

I'll try update here as we learn more.  

Thank you for your prayers!
-Andy

Resting when we first arrived at the ER.

Hanging out in the PICU. Sorry for the quality - the lights were turned down and I didn't want to use the flash.




Saturday, February 23, 2013

Hospital report #7

Ok folks. We're back at the hospital. Typing this on an iPod so I'll keep it short. Last night at home was miserable. I was up most of the night and wasn't eating. I had a high fever when Mom and Dad checked this afternoon. Long story short, I'm in the ER resting comfortably. Dr. Booker removed the cast and now they're working on my fever.

Many more details when we have them.


Friday, February 22, 2013

Hospital report #6

Ok, I think we've fine-tuned things at this point. Doctor Booker and the cast technician came back and they brought the saw again. They removed a bigger piece near my belly and little bit more by my right let. I think that'll do it. I'm sleeping at the moment.

We're hanging out at the hospital waiting for the car seat team to come visit us. I don't think I'll be able fit in my regular car seat for a few months so they'll send me home with a different one.

If you look closely, you'll see that I chose to sleep through the noise and vibration.

We'll try post more complete pictures when we get home!

Hospital report #5

Last night did not go very well. Dad went home at 9:30 to take care of Keillor and then I kept Mom up all night at the hospital. Nothing seemed to calm me down. Not even the offer of more food!

Dad got back to my room at about 7:30 this morning and everyone was aware that I was not in a good mood. Dr. Booker (my main ortho doctor) came to visit and he made the decision that some of the cast needed to be cut away to relieve swelling in my feet and to give my belly more room to expand.

The cuts combined with some mild pain medication seems to have helped. I'm trying to nap now...


Thursday, February 21, 2013

Hospital report #4

Well, here it is. The cast is here!

There's a size 2 diaper stuffed into the crotch area of the cast and that's a size 4 diaper that you see wrapped around me. Duct tape lines the edges of the cast since that's easier to clean and replace than the cast. Mom and Dad received a list a mile long with instructions on how to take care of it. 
You'll see that I was in a pretty good mood earlier!

Close-up of the cast. 

Dad thinks that it looks like I was in a bar brawl.

See? Still a happy baby!

Hospital report #3

Dad's got pictures of my cast, but you'll have to wait. The camera battery died and it's currently recharging.

But we got one of me enjoying another bottle using the iPod camera...

Notice I'm back to my regular self with my furrowed brow.

Hospital report #2

I'm sleeping now. The doctors came and got Mom and Dad when I was just waking up. I was not happy. Normally it's a sure thing that eating will calm me down, but I was having none of it...

Not my finest moment.

I finally got some food down, then puked it up, then ate again and now I'm in my overnight room sleeping. I have a nice warm blanket on top of me at the moment, so Dad wasn't able to get a photo of the cast for you yet. It's going to take some getting used to (mostly for Mom and Dad)!


p.s. There's an Xbox in our room!

Hospital report #1

Snow storm in Denver today. But luckily there isn't much traffic on the roads at 4:45 am! Mom and Dad woke me up at 3:00 am to feed me since I'm not allowed to have anything to eat 4 hours before surgery (which was scheduled at 7:30 am). Then I went back to sleep.

I slept through the diaper change at 4:40. I slept through getting into the car seat a few minutes later. I slept through the car ride and getting in to the hospital. In fact, I didn't wake up until about 6:00 am when Mom and Dad were asked to change me into my own little hospital gown!

I was very well behaved with all of the nurses and doctors that came in to check on me and visit with Mom and Dad. At 7:30 on the dot, a nurse came in an wheeled me away. Not so traumatic for me since I loved being wheeled around on the crib. I can't say the same for my parents!

Waiting to check-in with Mom at 5:15 am.

Shhhh! I'm sleeping in here!


My new gown! The hospital has been fun so far!

Doing it myself

I know, I know, I'm in surgery right about now, but I thought my regular readers would still appreciate a post. Here's a series of shots of me trying to figure out how to put my pacifier back in my mouth. I'm oh so close!

 
 
 



Wednesday, February 20, 2013

Snacks for mom

I don't want Mom to feel too stressed tomorrow, so I ran out and got her a few treats for while she's in the waiting room...

Dad tells me these are disgusting, but it's what Mom would want.

Cast tomorrow

We're making the trip to the hospital bright and early tomorrow morning (5:30 am check-in time). We had a pre-op meeting with the doctor yesterday and they're going to have us stay in the hospital tomorrow night to get used to the cast. The doc thought that'd be a good idea since we'll have the nurses to help us get comfortable everything.

Dad will have the camera along so we'll try to keep everyone up-to-date on the progress. The biggest outstanding decision at this point is what color Mom and Dad are going to pick for my cast!

We zipped over to our regular clinic to weigh me this morning. Then we'll weigh me again after the procedure tomorrow. That will give us an approximate weight of the cast so we can subtract that amount from future weigh-ins.

13 pounds, 4 ounces. 
The size of my belly is quite impressive lately!



Tuesday, February 19, 2013

My tongue

Dad caught me playing with my new horse toy yesterday. I was pulling it to my chest and trying to get my mouth around the plastic rings!


Out to lunch

Uncle Brady doesn't work on Mondays so we went out to lunch!

Pretty comfy lap!

Monday, February 18, 2013

Up on the shoulders

How mad will Dad get when I learn to use his ears as handles?

Ear muffs

I couldn't make it through the whole game again on Saturday evening. I felt the need for a nap just as it was getting real exciting.

Here's me on Mom's lap...


And here's a link to a clip of how well I can tune out the crowd.


Sunday, February 17, 2013

New furniture

We got a new ottoman for the living room the other day. It's one of those where the top lifts so you can store stuff.

As soon as Dad put the first blanket in there, Keillor started staring at it like it was his new bed.

I'm pretty sure both Keillor and I will get in trouble in years to come playing around with this.

p.s. Grandparents, the top does not slam down. You have to manually push it down. Don't worry!

Stupid human trick

Pssst...wanna see a trick?


I can fit my hand in my mouth!

And now for my next trick...

Both hands!



Saturday, February 16, 2013

Squealing

So Mom came home on Friday and I was in a great mood. In fact, I picked that evening to start squealing with excitement a bit. Here's a quick video shot while we were playing around with the mirror. We apologize for the low quality, but at least you can hear me!


Efficiency

Dad was teaching me a lesson on efficiency today while doing the laundry. For example, why take two separate trips down to the basement - one for the laundry and one for the baby, when you can do it all in one trip?




Self portrait

Me and Dad goofing around...