Helpless…Not Hopeless!

Katie was extubated tonight!  She has been breathing by herself for over 4 hours now and she is off to a good start.  She is still receiving some support from a CPAP machine but she is waking up more, and has even started to make some faint sounds.  Her voice is raspy and cracked but that is to be expected after a week of having a tube in her throat.  I was bedside when she made a slight sound- it was incredible.  It was just a simple, crackled murmor, but it was poetry to a daddy’s ears.

We are still a long way from out of the woods but I can’t help but feel encouraged by Katie’s current condition.  It has only been 2 days since her operation and thus far she has cleared every hurdle with grace and relative ease.  I know there are bumps to come, and I rarely allow myself to feel excited when her condition improves. I fight vehemently to avoid the unstable peaks and valleys of this arduous journey, but tonight I feel like splurging!  It’s the weekend, and I am binging on a feast of Katie excitement.

The one downside- as Katie came off the vent and was weaned from her sedatives, she obviously woke up.  This is more bittersweet than you would anticipate.  The sweetness of seeing her eyes looking up at you is fantastic, but the sadness and pain you can sometimes see is difficult to cope with as a parent.  All I want to do is make the pain go away. All I want to do is make it better.  We are making it better in the long term…I know that, but tonight Katie is lying in a hospital bed in pain, and when she looks at me with those sleepy eyes I know she is less than comfortable.  All I can do is hope for a speedy recovery and for the continued compassionate care of a miraculous medical team.

We might be helpless, but tonight we are certainly not hopeless!

Our Sunflower

Our Little Sunflower

We woke up to this morning to this!  Our little Munchkin had been transformed into a sunflower for Halloween.  It is amazing to Vickie and I that Nurse Erin (another Angel of a nurse here!) would go to these lengths for Katie. 

2 nights ago nurse Erin helped make Vickie and I laugh…a lot.  Last night she worked to make our day just a little bit brighter.  It may not seem like a lot to you, or it may seem odd to you given the severity of Katie’s condition, but it is nothing short of perfect for our family. 

Thank you Erin for this wonderful gesture; thank you Katie for being so incredibly cute!!

Proud Daddy!

Katie and her supporting cast

What’s not to love about Katie?  Granted, she is my daughter which makes me flagrantly bias, but there is so much to like about her personality!  Watching her over the past five months has been an absolute joy.  The combination of her happy disposition with her scrappy perseverance makes my heart melt. You know, I am just so proud of my daughter’s efforts, so thankful for her attributes, and so hopeful for the influence she will have on this world.  I’m typing a word, looking at her, typing some more…it is humbling to look at such a small baby and fathom all that she has had to endure, yet whenever she’s awake she is more than willing to flash a smile at her adoring fans.  What do us “grown-ups” have to complain about?!

Not much has changed here in the PICU-  Katie continues to hold her own as her support from machines continues to dwindle.  She occasionally opens her eyes and gingerly looks around before the seditives take hold and pull her back into a sleepy state. The current goal is to extubate tomorrow.  The skies are clear, the winds are low, but the weatherman said to expect a storm…we’re still watching, still waiting…hoping that the weatherman got it wrong this time.  None of us would be sad if we had to miss Hurricane Katie.  We all just want to see that sweet little girl with that engaging smile again.

What’s all the fuss about

It’s 11:30am and there’s not much to report.  They continue to wean Katie from the ventilator and so far so great!  All of her numbers continue to remain in their desired ranges.  Using Katie’s historical performance as an indication of what’s to come, we have to anticipate some sort of excitement in the near future.  I’m not sure if I’m jaded or just well versed in this process.  Whatever it is, it is fair to anticipate a change that would call for more intensive management in the coming hours and days, otherwise I’ll start to wonder what all of the fuss was about (just kidding).

Vickie and I are doing well. We didn’t end up getting to sleep until a bit later than my last post, not because of issues with Katie but because we were laughing too much with the nurses.  Although I had this horrible guilt about being so jovial, I think that laughter was an amazing release-  unfortunately, my tiredness together with some funny moments made me quite the mess…I couldn’t stop giggling for minutes on end.  In retrospect being giddy is probably a healthier pressure release than punching a wall or developing road rage.

It’s almost time to head home for a shower so that we don’t have a visit from the health department!  I’ll provide another update this afternoon.  And remember- “Belief, makes things real. Makes things feel, feel alright.  Believe makes things true, things like you…”- Gavin Degraw.  My angel continues to amaze me!

Post Glenn Update #2

I am exhausted!  It’s a little after midnight and it is time for bed.  So far so quiet (knock on wood).  Katie’s numbers all look very stable and the constant flow of doctors in and out of her room has been nice and relaxed- they look, they check, they feel satisfied, they leave.  I like it like that.

There are some factors that need to improve dramatically in order for Katie to recover, most of which are currently creating her pleasant performance at the moment.  Katie is virtually maximized in her blood pressure support, heart rhythm control, cardiac output, and cardiac support.  In short, there are a lot of machines regulating Katie’s condition.  Thankfully, Katie has passed her first step-  they decreased her oxygen support from 100% to 75% and her saturation levels have remained at the desired level…we will continue to wean, and hope that Katie continues to maintain her current numbers.

Before going to bed I have to comment on the regard that the staff here have for my daughter.  Not only are they incredibly adept at their respective jobs, but the team is genuinely commited to Katie’s wellbeing, so much so that off duty doctors are calling in to check on her status.  Couple that with the incredible nurses who are attentive to Katie’s every need and I know that I can sleep peacefully this evening. It is so reassuring as a parent to know that your child is in caringly competent hands.

Post Glenn Update #1

We got up to the ICU at 5:10pm to find 12 people in Katie’s room trying to regulate her numbers (4 cardiologists, 2 cardiac surgeons, 2 anesthesiologists, 1 intensivists, and 3+ nurses depending on the moment).  Right now she is critical but stable.  Dr. Kim defined her condition as marginal.  There is a lot of detail about saturations, blood pressures, positive/negative pressure that I will spare you from at the moment.  Just know that we are due to have a bumpy 48 hours or so with another surgery looming as a very real possibility. 

We finally got to kiss our munchkin at 6:15pm-  the sight of her would probably floor anyone who hasn’t seen a post-op cardiac kid, but compared to her first surgery she looks fantastic!  She looks peaceful, not too puffy, but is accompanied by the standard army of machines.  I still have too much nervous tension, or is it nerves, or is it relief, or is it fear, or is it….you get the point-  it helps to document, but I am way too cloudy to reach any deeper than the superficial synopsis.

Glenn Update #4

We just met with Dr. Asnes.  The surgery is over. They are currently beginning the process of closing up Katie’s chest. It is too soon to tell if the surgery was a success but early indications suggest that things are doing well.  Katie was on bypass for longer than anticipated. Her SVC was narrower than suggested, and as a result, they had to patch her twice forcing the extended period on ECMO- for now she is off bypass…let’s hope it stays that way.

I will write in more depth later.  We expect and have been warned to anticipate a long night and upcoming couple of days. We are feeling a little relieved but we understand that we are still very early in the game.  There’s a long road ahead, but I’ll gladly accept our current position.

Glenn Update #3

We were starting to get a little antsy so we called into the surgery at 2:00pm.  They are currently patching Katie’s SVC (Superior Vena Cava)…(look it up if you want more detail- haha).  She is currently on by-pass and will need considerable suturing.  Translation-  this is an important period b/c of the bypass.  Hopefully Katie can come off and won’t need to come back to the ICU on ECMO (bypass machine).  Also, the considerable sutures needed translates so it’s going to be a while longer.

So far so good, or something like that.

I know some of you are visiting and revisiting the page throughout the day-  you can only imagine our anxiety as we sit here in wait. About two hours ago the nervous energy coupled with the concerned looks around the table made me feel like I needed to exercise.  I wasn’t about to go for a run or find a basketball court so I did the next best thing-  I ran to the 11th floor and back…needless to say, I feel more relaxed now.  I never thought I’d become that weirdo…too late.

Glenn Update #2

We just got a call at 10:50am that they got all of the lines they needed.They are now going to start what they came here to do.

Vickie and I were discussing how “normal” all of this has become.  5 months ago a comparable day was far more difficult to cope with. I have realized that it isn’t that this is normal but that the concept of normal has been removed from our lives for a while.  This is just something we’re successfully learning to cope with. 

Time to put my headphones back on, put my head down, and wait for more word.

Glenn Update #1

Katie went down to the OR at 8:40am. 

We got our first update at 10.10am.  They are still looking to get some lines so the actual “surgery” hasn’t even started yet. From here it’ll be about 2 hours until they even have access.