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, February 23, 2011

It's Been Awhile!

Once again I’ve found myself behind in the updating of this blog and it’s gotten to the point where it feels too overwhelming to try and recap what’s been going on.  I’m pretty sure most of the people that follow this are aware and most likely follow Gracie’s caringbridge site.  Carrie does a wonderful job of updating that site, but to relieve a little of the stress that I have, I thought I’d write in a few pieces a little about what’s been going on. 
Thank God we are part of a new program that provides home oximeters – this allows us to keep track of the amount of oxygen in Gracie’s blood.  We were warned to never bring Gracie into a normal ER because the folks not familiar with hearts like Gracie’s would freak out if they saw a baby spending all of her time with a blood oxygen percentage in the 70’s.  You and I walk around in the high 90’s if not 100%.  I remember when Lylli had RSV when she was a couple months old, her sats dipped into the high 80’s a couple of times and everybody panicked.  Gracie lives her life in the 70’s and for her and her heart, it’s just fine.  The bad part of these oximeters is that they use a little probe that gets taped to the foot (or hand) to pickup whatever it needs to pickup to measure this – something to do with how bright a red light shines through the other side of the foot tells the machine where her oxygen saturations AKA sats are at.  These probes only last for a few days before going bad.  This we found out the hard way when a few days after we first got home with Gracie, her sats were not registering on the machine like they previously  were and  were registering lower and lower – a few panicked phone calls to the cardiologists and the medical equipment company and the changing of the probe, taught us that her heart wasn’t failing, but the probe was.  Unfortunately because of this fact, I’ve grown to not be too trusting of the machine and tend to use Gracie’s color as my indicator – If her lips turn blue, I’ll generally just do something to annoy her causing her to cry a little until she turns pink again.  Probably not the correct way to do it, but it seemed to work for me.  Over Superbowl weekend,  both of the girls had coughs which we figured was the reason why Gracie’s sats were a little lower.  However, they kept getting lower and lower – she looked fine to me and since I didn’t trust the machine, I didn’t think much of it.  Carrie on the other hand, had increasing concern and on Monday evening (2/7), after opening and trying every extra new probe we had, she woke me up around midnight and informed me that she was going to bring Gracie into the ER at Children’s – I will most likely rave about my wife in a later blog, but she, once again, has saved our daughter’s life… more on that later – Anyway, Carrie brought Gracie to the hospital and I stayed home with Lylli and waited for updates – by that time her sats were getting pretty low  -- I won’t go into details, but add Children’s Emergency room to the list of places where they’ll see those numbers and freak out -- The ER visit was very traumatizing for both Carrie and Gracie.  Carrie told me that I would have absolutely flipped out on them.  Thankfully, one of the Caridiac Intensivist doctors that works in the Cardiovascular Critical Care unit (our home away from home) came into the ER and after seeing how distressed she was, made everybody stop what they were doing immediately and rushed her up to the CVCC -- besides a small  “productive” cough, her lungs were fine when she came into the ER, but when she left, her lungs were pretty messed up and she was pretty critical.  They were able to work their magic and got her into a more stable state.  We learned the term “Direct Admit” and in the future we will work with the cardiologist on call, skip the whole ER all together, and get her to the CVCC immediately.  Carrie is pretty convinced that if the CVCC doctor had not stopped what was going on in the ER, that Gracie would not have made it out.  In fact, she has scheduled a meeting with one of the main Intensive Care doctors on the cardiac floor to voice her concern about damaging that process could potentially be to a “heart” baby.  Anyway, with oxygen support as she started to recover from the ER, her sats began to slightly and briefly rise again – they wanted to rule out that all of this wasn’t something respitory  because most of the evidence pointed to the shunt that supplies blood to the lungs that was  used for her Norwood procedure was too small.  On that Thursday they did a cath procedure to get better pictures of her heart.  Apparently things were going well in the procedure until they went back for “one last pic” through the shunt into her lungs  -- her sats began to plummet and it increased her pulmonary hypertension.   It was determined that the shunt was small, but they wanted to give her some time to recover and see if, although small, the shunt would be sufficient for at least awhile while we waited for the Glenn procedure.  That’s usually the next surgery after the Norwood.  This is typically done when a baby is around 6 months or when the shunt us outgrown – but regardless of the age – they want the baby to weight at least 5 kg before going through the Glenn.  Gracie is currently closer to 4 kg, so she’s a bit too small.  After the procedure, I was talking with the surgeon about the next steps.  He told me that although small, the cath looked pretty good, so to rule everything else out, we’ll just wait and if she’s in the same condition in a week, we’ll most likely need to give her surgery to give her a bigger shunt (this was on Thursday).  Well with oxygen support, she stayed on the ventilator over the weekend and was improving slightly, however, whether it’s the thousands of dollars a day cost for her room or the fact that hospital years are more like dog years, I got a call at work on Monday morning telling me that they were doing heart surgery that day and the surgeon wanted to meet with us around 12:30.  How romantic – heart surgery on Valentine’s day. 
To Be Continued…

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