Repeat to Self: The cure is not worse than the disease. [sometimes it has been hard to remember]

There are two parts to this update. Connected, obviously in one little boy...but different stories in my mind.

Part A : Happy Baby (!)
The steroid treatment for the infantile spasms is still working/worked - no spasms for weeks! - and we are now weaning him off the steroids which is slow and scary (with us worrying the spasms might come back) but going well. However, the baby started to be getting very sick, in pain, and more unhappy than we have seen him.  So... the last two weeks have been fun (read sarcasm) and included one 9 hour odyssey in the ER, 3 pediatrician appts, an appt with his GI specialist, one with his cardiologist, and an echocardiogram. We will soon be adding a nephrologist to his team of specialists. All that gave us results showing a kidney stone (a kidney stone!), a UTI, and gastritis....Jacob just can't catch a break.... all most likely side effects related to the treatment of the spasms. [Repeat to self: the cure is not worse than the disease.] 

So...new medication, antibiotics, etc. followed...  and yes, of course he got a yeast infection from the antibiotics treating the UTI. Oy!

BUT this past weekend....somehow the combo of reduced steroids, most of the above well on its way to being resolved, and his increased calories (per GI appt)...resulted in an active happy baby! Who knew. Overnight, baby Jacob seemed to reappear.  We certainly saw glimpses of improvement the previous weekend, but this past weekend - he's a different baby.  Saturday morning he had three toys in his hands at once as if to make up for lost time.  And wow that does wonders for his parents' mental state. Big smiles. Yay.

[I'm including evidence - happy baby pictures!]

Part B: Oh Little Heart
In the midst of the insanity the last couple of weeks, we also had a cardiology follow-up.  And....well... not so great news there.  It looks like Jacob's pulmonary hypertension has increased - maybe as a result of the steroids but maybe just as a result of his general growth.  This in turn is making his heart work harder and is leading the team to think we should do the repair sooner rather than later.  They make open heart surgery sound so routine with the word 'repair' (although for them it is - routine, that is). As Jacob's case is complicated by all these other factors (read Part A), the team is consulting - putting their heads together to figure out the best timeline for Jacob.  Likely Jacob will have a cath procedure and heart surgery in the next couple of months.  Stay tuned.

I've said it before but worth saying again. His team of specialists are all rock stars and in situations like this it is never more clear. They all know each other, are talking to each other and coordinating well together.  Many meeting confirmation emails with lots of people copied (some we know well and extended team members we don't) - but we are copied on everything and the conversation is smart, responsive and always with what's best for Jacob in mind. 

SO... This Wednesday is Jacob's last dose of steroids (!) and we hope that's the last we have to think about EEG's and infantile spasms.   Follow-up with neuro will happen after that.  There are some instances of relapse and a second round of steroids but we are hoping/praying that is not the case for Jacob.

Much more consultation with cardiology ahead... and more about that when we know.

For now - happy to keep the medical what-not in perspective and just enjoy Jacob being back to happy little Jacob.