Visiting the Cardiologist

This week was heart week for Jacob!  It had been 18 months since he'd seen the cardiologist and they wanted to do a checkup to make sure his ticker was still working properly.

We had planed our echo cardiogram for 11:00 a.m and then were scheduled to see the cardiologist at 12:30.  I knew we were in for a loooong day - especially since it's a 30 minute drive to see the Doctor.  So, at 10:15 little Jake and I were off to see the doctor! I had a bag filled with books, treats, videos, and a mental list of things we can do at the hospital where the cardiologist is located (since we're so well acquainted with it from past years!)

We show up at the cardiologist and Jake hit full-blown flirt mode!  He made his rounds to each of the little girls in the waiting room, then started flirting with the ladies at the desk, poking his head around the monitors to grin at them and wave.

He was all giggles and smiles until he took one look at the echo room - the bed,the monitors, the machines.  He didn't even walk inside before he totally freaked out.

Now, I expected him to be less than thrilled about an echo, but it has been more than 3 years since his heart surgery, and he's only had 1 other weekend stint in the hospital since then.  A full on melt-down was not anticipated.  But he looked like he was have a serious case of PTSD or something.

I had to pick him up, wiggling and wailing, take of his shirt, lay down with him on the bed, and physically hold his arms, legs, head and body while the poor technician tried to echo his heart.  30 minutes later, the technician gives up, telling me she's gotten as much as she's gonna get on my son.

We leave the room, both Jake and I looking like we'd just run a marathon.  I wish I'd brought another change of clothes.  Gah!

We head out to the shocked faces of the ladies at the front desk and are informed that we have 1 hour before we can see the doctor.  Undaunted, I tell them I'll see 'em in an hour, and take my son out to roam the hospital.

We stop by the Ronald McDonald House so he can talk to Ronald and give him a hug, then we go to the fish hall to listen to the fish, and check out the city from the sky walk.  Then, we went and had lunch in the cafeteria - which was quite exciting because there was no high chair and Jake was still grumpy from his appointment.  So even the dessert wasn't interesting him that day.

Finally, an hour later, we find our way back to the Dr's office and are called back.  The poor nurse tries to check his heart but all of Jake's happiness is spent so he just keeps swatting her away and insists on climbing up giving himself googly eyes in the giant mirror next to the examination bed.  But the sweet woman takes it in strides and goes to find the Doctor.

He walks in all smiles and sass (have I mentioned I like this doctor?) and tells me he's been getting lots of comments about how Jacob is full of 'energy'.  Laughing, I agree that his description is the most politically correct way of saying he's crazy active today.

Jake was nice enough to let the doctor listen to his heart for a minute, but nothing else.


And the prognosis is:  He sounds GREAT!  There are no leaks or issues whatsoever!  We don't have to go back for THREE MORE YEARS!!


It was totally worth the 5 hours of hospital time to get the news.

Our 1 - Year Anniversary!!!

NOTE:  FINALLY found myself back on my blog and saw that I'd never finished and/or posted my latest entry.  It's from MARCH!  Ouch....I must do better.  There will be another one with much more upbeat news shortly.

On Friday, I called our heart doctor and scheduled an appointment for his 1-year echo cardiogram. That one single phone call set off an entire weekend filled with retrospect and reminiscing over what our lives have become in the last year.

With Jacob now 16 months-old, and 13 months after his heart surgery, time has flown and our little Jacob has grown by leaps and bounds!

It's hard to believe that just one year ago we were, in essence, watching our baby slowly die before our eyes, and what a tremendous feat it was just to get him to reach 10 lbs in weight.  The physical therapist wouldn't even touch him because he looked so sickly, and I just looked at him in awe at his calm, patient demeanor as he endured his own personal trials at such a young and tender age.

(Jacob immediately after heart surgery)

As we look at photos, it is easy to discern which photos were pre-surgery and post-surgery by the sadness and lethargy in his face.

(weigh in just before surgery)

But as soon as he had his heart repaired a light literally switched on.  He was taken off ALL of his medications before he left home.  He was taken off his feeding tube within a couple of days of his surgery.  No longer did he just lay limp and lifeless watching the world go on around him.  He began to engage, smile, move, and LIVE. 

At his 1-year review with the cardiologist, we were told that not only does his heart sound nearly perfect, but they won't even do much more than listen to it with a stethoscope next year.  Our little boy has gone from missing the center of his heart, to a complete recovery physically.

Now he runs around after his sister, giggling as she runs screaming from him terrified of his assault on her personal space.  He walks, runs, climbs, crawls, squats in a catcher's stance, and spends every waking minute making up for lost time, exploring the world around him and all that it holds for our sweet little boy.

For us, the future is bright, and our hopes for Jacob are high.  Rather than standing at idle, we are moving full speed ahead trying to keep up with our dynamic, happy, lively little boy.  Wish us luck!

Progress is Progress - Jacob's diagnosed with sepsis, e-coli, and possible meningitis

No doubt about it, yesterday was a TOUGH day.  But it's amazing what 12 hours can do to help your perspective.  That and the fact that when we came in to see Jacob this morning he was peacefully sleeping like a little angel.

 His coloring was less dusky, and he looked like he wasn't in any pain (yay!)  We met with the doctors and nurses and discovered the following:

Jacob's platelets had fallen last night to 17,000 and at one point his white blood cells were as low as 5,000 - neither of which are good numbers AT ALL.  They discovered that he has Sepsis ( http://en.wikipedia.org/wiki/Sepsis and http://en.wikipedia.org/wiki/Neonatal_sepsis ) which is a blood infection.  This means that they have put Jacob on 3 IV antibiotics.  They did not end up doing a platelet transfusion because when they checked his numbers again later in the evening they were rising on their own.  And since they did not do the transfusion, they did not do the lumbar poke (spinal tap) because they need the platelets to be higher to help combat infection and to 'plug' up the hole that his created when they take the spinal fluid from his back.  However, once the platelet counts are up, they still want to check the spinal fluid because they need to find out if the sepsis has spread to Jacob's brain.  If it has spread to his brain then the antibiotics will have to be administered for another week. Right now, the antibiotic regimen will be a 3 week process.  If the sepsis has spread to his brain, they will have him on IV antibiotics for 4 weeks.  This pretty much means that Jacob will be in the hospital for at least 3, and possibly 4 more weeks (sigh). 

However, I can't help but feel blessed that they found the sepsis so quickly.  I had anticipated 3-day cultures and not having any answers until Wednesday.  The fact that they found the Sepsis so quickly means that they can treat it quicker, and were (hopefully) able to ward off any of the major side effects (or death) from it. And, from what I've read about Sepsis, this is not something you want to mess around with.  It's serious stuff, and darned near impossible to diagnosis in infants until you're at the major organ failure stage.  How blessed we were to already be in the hospital around all of the medical care he needed when he tanked last night. 

We also discovered later in the day that Jacob has e coli in his urine, but that issue should be resolved with the antibiotics he's already on.  They took another echo cardiogram this morning and told us that no damage was noted to the heart from his 'episode', so what that means is that once the antibiotics have run their course, the cardiologist will continue with Jacob's 3 new heart medicines which he will be taking until he has his heart surgery.

I'm getting the impression that waiting 6 months until his surgery is fairly unattainable - we're looking closer to the 3 month mark.  But I guess miracles can happen, so I'm choosing to hold out hope until someone sits me down and gives me a surgery date for Jacob. :\

Other than all of the new information to digest, today was pretty uneventful.  They let Jacob begin to feed again, so I got to bottle feed him today and cuddle with him (I think that was more for my benefit than his!) for a while.  And it was nice to hold him and know that today was a relatively pain free day for him.

At the end of the day, although we are faced with the fact that Jacob will be in the hospital another month, he is in good hands and he is making progress.

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