I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.

This blog is an attempt to document my quest to become a dad that my family can be proud of.

Wednesday, April 25, 2012

Gracie Update

For those of you that follow Gracie's Caringbridge site, this post may be a bit redundant because I am going to steal some of Carrie's posts.  But there are so many people that have approached me and asked about Gracie, I thought I would give a quick recap of what's been going on this week.

Recap of Saturday:
Gracie had a cold for a few weeks, but at the end of last week it has turned to pneumonia. She was on antibiotics for a few days after a visit to her family doctor, but her breathing got a little too rough and her oxygen needs too high for us to be comfortable with her at home. So, on Saturday morning we brought her to the ER at, our home away from home, Minneapolis Children's.
She didn't respond to her initial antibiotics, so they were thinking it was probably viral, which makes it tough because you can't really fix it, you just have to WAIT. She was on 3 liters of oxygen and her sats (oxygen saturations) were still only in the upper 80s to low 90s – She was very crabby for a couple days and was getting worse – it was obvious something was really wrong.  They did several nebulizer treatments to try and get her breathing to be easier.

Recap of Sunday (Carrie's whole cb update):
What a day! Not one I care to repeat any time soon! Gracie continued to do ok through the night and, with the help of some meds, even slept. But, around 4 am, her breathing and sats got worse. She was working very, very hard to breathe and even with 5 liters of oxygen going up her nose, her sats were only in the 80's. So, they decided to intubate her. They put her on the ventilator this morning around 8:00. With that came sedation meds to keep her calm and, although we really hate seeing her on the ventilator, she is much more comfortable.
Around the same time, the nurse noticed that her pupils were very different - one was big and the other was very small. Yikes. They took her downstairs for a head CT to make sure everything was ok. They didn't find anything on the scan, which is very good. The theory is that when the doctor put a central line in Gracie's neck, she irritated a nerve that caused her pupils to react. They still haven't gone back to normal, but no one seems worried about it.
THEN - as if that wasn't enough for a day - her labs showed her potassium levels were really high and she hadn't had a wet diaper for a long time. Something was happening with her kidneys. They did a kidney ultrasound that showed her kidneys were swollen. Nobody knows why they were not working, but they needed to start working to clear the potassium out of her system. If potassium gets too high it can make the heart stop. The next labs showed her levels even higher - critically high. They gave her several meds to lower her levels of potassium and some interventions to get her to pee and now, finally, she is peeing a little and her potassium is within normal limits. They even had the IV in to allow them to do dialysis, but - knock on wood - it doesn't look like we are going to need it.
What a day. We were pretty worried and stressed this afternoon, but things are looking better now. She is still on the ventilator with lots of support, but her sats are getting better and her blood gases are great. Hopefully they will even be able to wean some of the ventilator settings soon. She is definitely not out of the woods yet, but I feel like I can breathe a little now.
The good news is, her heart is doing good :) Ironically, all of this has nothing to do with her heart. It is a little more stressed, but it is understandable with all she has going on.
Thank you so much for your thoughts, prayers and words of support. It means a lot to us. I really hope my update tomorrow will be much more boring
Monday (Carrie's CB recap):
Gracie had a much better day today. She is still pretty sick, but things are going on the right direction. Her potassium is still low - they might even have to give her some to keep it from getting too low. She is peeing lots now. Apparently the kidneys get "stupid" when they are recovering and they forget to hang onto anything. As part of the healing process they are going to dump out anything that goes in. So, we have to be very careful about making sure she doesn't get too dehydrated. It is a delicate balance of making sure she has just the right amount of fluid in her body.
Gracie is still on the ventilator and probably will be for a while. She has lots of junk in her lungs that needs to get out before she will be able to breathe easy without the ventilator. They have been able to wean the oxygen down from 80% to 40% and some of the settings have been weaned so she is getting less support.

So the last couple of days have been about the same – nothing too exciting – her mascot is the tortoise during these stays – slow and steady.  Gracie is still critical, but her kidneys are slowly getting better.  She'll probably spend a couple weeks in the CVCC at Children's.  I'm hoping that she is off the ventilator soon – yesterday she was awake quite a bit and for the most part was relatively calm.  It's so nice to see her with her eyes open and calm.  I know it's just a matter of time before she turns back into the spunky Gracie that tries to rip the ventilator out – It's a battle for the nurses, but that fight has gotten her where she is today (I try to think about how tough she is when my mind is telling me to stop during my workouts).  I will never get used to seeing my child on a ventilator and for those of you that have seen yours, you know how devastating it can be to see that silent cry and not be able to do anything about it.  The last couple of days were tough on all of us – I think Carrie said it best – the adrenaline of how serious things were over the weekend has now worn off a bit and we both kind of got to that angry phase.  This poor little girl has been through so much in her short 17 months of life.  After all of these ground breaking, life saving heart surgeries she's been through – the latest in Boston over Christmas and now she's in critical condition in the ICU because she caught a cold.  Enough is enough!!!  But I couldn't be more proud of how tough she is.  And speaking of proud – I can't do my wife justice when I attempt to put into words what she does for our family – she says I'm too wordy, so the best compliment I can give her is to keep it short, but I am amazed that at 35 weeks pregnant, she, without complaint, stands/sleeps next to that hospital bed just in case Gracie opens her eyes so she knows that Mommy is there – I am a very lucky man.  Let's hope Gracie comes home before the arrival of our son – that would add a whole new level of complexity!!!
My last post was about my first week at FXB.  I was not able to make it last Saturday because of Gracie's condition – I gotta admit, my inner 3 year old was a little jealous of those that got a perfect attendance sticker on their check in card for last week.  I was able to make to the 9:30 class on Monday and have figured out a solution for someone to watch our other daughter, Lylli, so I can go to my normal 5 am class.  I'm burning the candle at both ends these days, but am determined to not let any excuse to sidetrack this effort.  As long as I'm not denying my highest priority, my family, during this difficult time, I will find a way to get there – FXB is the tool that I am using to make sure that I am around for these guys for a real long time.  Wish me luck -- I am adding another level of complexity for a week starting today – I have to carry the 24 x 7 on call pager for work.  The last thing I need to do is add more stress these days, but whatever doesn't kill me, right?

Thank you for all of the people that have found this blog – the support has been great!! 

Saturday, April 21, 2012

FXB Week 1

As often happens at the start of a new important chapter in my life, I think to myself over and over about how I need to write a blog post about it, but as times goes by, I become overwhelmed at the thought – writing is not exactly my greatest strength and I struggle because I want to adequately reflect in words what is happening. 


That said – a week ago today, I walked into a room full of people to do my baseline testing to kickoff the 10 week program at FXB.  To be honest, I questioned what I was doing there that day.  A room full of people is the last place I want to be – especially doing things that point out my obvious weaknesses that I'd been denying for awhile now.   It was very humbling – on that day, I did a step test to check heart rate, I ran a mile, did pushups, sit-ups, tested my reach with a stretch, got my body fat tested, got weighed, and had them measure my chest, arms, waist, hips and thigh – not to mention posed for a "Before" picture wearing nothing but skimpy shorts.  Needless to say, after seeing my results of all of these tests, I had never been more ashamed of where I've gotten myself physically.  It's amazing what a guy can convince himself of – I mean, I wrestled in the state tournament in high school, was a scholarship football player in college, bench pressed 500 lbs, squatted a lot more than that and studied and lived the bodybuilding lifestyle enough to understand what I need to do to cut fat.  All of that, of course I'm still "somewhat" fit, right? – I mean, sure there's some extra weight, but I'm still a stud, right?  Nope.  It's that same skewed thinking that got me a little skeptical about taking advice from a bunch of confident younger guys walking around with no shirt sleeves on (ok older than me too Tim) – it quickly became obvious to me that these guys were not the d-bags that I convinced myself they might be, but that it was simply my personal defense mechanism for dealing with where I'm at.  I think it's a testosterone thing, but those thoughts couldn't have been further from the truth.   


I woke up Monday at 4 AM – I was still very sore from testing and wondered what I was getting myself into, but made it to my first class – cardio kickboxing.  I won't bore you with all of the details, but let's just say that I looked at the clock about 5 minutes into the warm-up and was already ready to call it a day.  Everybody there is so encouraging – it's a staple of the program that all people, even after they've been there for awhile need to encourage and help the newbies – it's an extremely positive environment and that team spirit is engrained in you from day one.  It's a strange vibe there – like everybody has stumbled upon a great secret that they feel obligated to share.  I know only after 1 week that is how I feel.  I don't think I have lost any weight yet, but can feel muscles that I haven't felt in a long time.  I can honestly say that after the second day, I already noticed myself walking a little taller (now sitting down was another story).  I am the furthest thing from a morning person, but I have been excited everyday to get up at 4 in the morning to get ready for class – it's a weird combination of being deathly afraid of the Hell that I'll go through for 45 minutes and excitement that I know this is going to get me where I want to be.  The first couple days I was embarrassed about not being able to do everything and about how out of shape I am, but it quickly became obvious that nobody cares a bit about where I'm at as long as I am doing my best to get better.  They leave me alone enough to battle my own demons to push myself, but are always lurking around the corner to give me a little "encouragement" when I let that voice in my head tell me to sandbag.   


This week, Gracie came down with Pneumonia and has spent most of the nights alarming due to low oxygen saturations and screaming – there have been a couple nights where I've only gotten a couple hours of sleep, but I still made it to class.  I've been exhausted, but am proud that I got there – I don't know if the old Rich would have done that.  I have followed the nutrition plan to a T and can't wait to get back for another workout to take the next step in the right direction.   I can honestly say after one week of this program that there will be a day that the name of this site will be ironic. 


All of that said, I was unable to make it to class this morning as Gracie has gotten worse, so we had to bring her to Children's where she has been admitted – hopefully for a very short stay.  She is stable and they are pretty sure that everything is good with her heart, so hopefully it's just a matter of getting her what she needs to fight the pneumonia.  As bummed as I was to not be able to go to class today, I know where my priorities lie, but I am also once again reminded of how important it is for me to get healthy – My family needs me. 


I'm going to stick with this and train and run that marathon in the fall and maybe someday I'll even get under 250 so I can shave off this beard?!  I will continue to record my journey

Friday, April 13, 2012

OK - I admit, the beard is getting out of control

It has been almost a month since my last post – I need to pick this back up again – knowing people read about what I'm doing helps keep me on task. 

Gracie went to a cardiologist appointment last Friday – she is the healthiest that she has been – despite having a cold at the time, the doctor was very pleased with where she's at.  She has also been making great strides in all of her therapies - we are very happy with the directions things are going.  She has even gained some weight.  She weighed in at a whopping 16 lbs 5 oz.  Its hard to believe that in just over a month, it will have been a year since we went to Boston for her Bivent repair.   

Lylli is also doing great as always – she is such a character and makes me laugh every day – there are times that this 3 ½ year old phase gets a little overwhelming, but that is to be expected – I am very proud of both of my girls. 

Carrie is now 33 weeks pregnant and is ready to be done – I think she has finally gotten to the point where she and her body know that she is done having babies after this one.  She was saying the other day that she has either been nursing or pregnant since February 2008.  Yikes!  Besides that, the pregnancy is going well and we are all very excited to meet baby Mickey.  If he is born on Memorial day (two days early), our kids will have birthdays on Memorial day, Thanksgiving, and Halloween this year.

I am now in my 5th week of the 30 week marathon training program.  Its going Ok but I feel like I should be further along - this week has not been the best.  I did my scheduled 2 miler on Tuesday.  On Wednesday morning, I was walking through my yard on the way to my bus stop - I got to the curb and my slip-on-shoe came half way off.  This caused me to stumble and fall off the curb - I landed 8 inches lower than I was standing square on my knee caps in the street (my feet still somewhat up on the curb).  Luckily, I caught myself before I landed on my face.  I hit pretty hard.  My initial thought was that of embarrassment because I was certain that my neighbors across the street saw the whole thing through their wide open picture window, so I popped up quickly, wiped off my jeans, shook off the cobwebs and made my way to the bus stop.  After sitting at my desk for several hours, I got up to walk around - my knees had stiffened up and I was in some pain – I was still thinking I would try to run, but by the time I got home, I came to the conclusion that it was in my best interest to skip my scheduled three mile run and ice/rest my knees instead.  The last thing I need right now is a nagging injury and I didn't want to hurt something else because I was favoring my knees.  I recently decided to make a slight change to my running schedule to not have three days in a row with my training runs, so yesterday was an off day.  I was thinking I might get caught up last night, but decided against it.  The knees still hurt a bit, but I'm hoping to get out for a couple mile run/walk tonight. 

If you use your creativity, on a SOMEWHAT related note, for lunch today, I went to my favorite sandwich place in the skyway.  I had to tell them that they wouldn't be seeing me for awhile – you see, today's sandwich was a last hurrah of sorts  - I have been doing this running thing and I feel like I'm making a little progress, but not as much as I should be.  I have to accept the fact that it's just as much about my eating and weight as it is my miles on the road – In order for me to do this thing, I really need to lose some weight and admittedly made the decision to not worry about my eating too much because I assumed the calories I burn running, would undoubtedly take off the pounds.  Well apparently that is not enough – so I have decided to commit to a 10 week program at FXB (www.facebook.com/#!/FXBBlaineMN).  I have heard wonderful things from people that have tried this.  It will take a lot of hard work, organization, and dedication -  10 weeks of working out at 5 am 6 days a week while also getting in my mileage for my marathon training program at night and doing it all while minimizing the impact to my family.  I plan to be very disciplined on my diet - hopefully it will kick start this weight loss thing – This beard is getting out of control and I vowed to keep it until I lose some significant weight.  For those of you that don't know the story behind the beard, I started growing it when we were out in Boston in November for Gracie's 6 month follow up appointment -- I decided to keep it when we found out that Gracie needed to go back for surgery over Christmas.  Since we were in the city where all 4 major sports have successful dynasties, I started calling it my playoff beard.  Once everything went well, I sort of felt like it was giving me some luck and decided to keep it a bit -- I thought it would be cool to lose some weight and then shave it off to reveal that some of the chins that were there when I started growing it were gone -- it then turned into a game because of the comments that Carrie sends my way on a daily basis leaving no doubt how she feels about it.  It has now become something that I use to remind myself of what I am working to accomplish this year -- I have only trimmed it a handful of times and will admit, its sort of gotten out of control -- I'm hoping, eventually, the beard comparisons will change from Santa Claus to Forrest Gump.   I go to FXB tomorrow at 9 AM for baseline testing: situps, pushups, mile run, etc – as well as weigh-in, measurements, and the dreaded "Before" picture.  I understand there are around 80 people signed up for this 10 week program.  My hope is to be in the running for the biggest transformation at the end of these 10 weeks (winner gets $1000).  I will keep you updated on this effort

Just thought I would check in – Hope all is well with you!!