Friday, December 16, 2011

Good News...?

Busy couple of days around here!  Took Eli to our local hospital to be set up with a Holter monitor Wednesday morning.  He screamed when they put it on him.  It doesn't hurt, it's just stickers on his chest, but I swear he has "flashbacks" to his hospitalizations and he knew he didn't want those on him.  Once he had a shirt covering them up he was fine.  He spent the next 24 hours with a trail of wires coming out of his clothes attached to a recording device (about the size of a small cell phone).  It was like a tail.  Overall he did really well with it, much better than I had anticipated, but it was still stressful.  If he saw the wires on his chest he would frantically start pulling at anything he could grab (wires, feeding tube, etc) so if he had to have his clothes changed it needed done very quickly! 

Thursday morning, a little over the 24 hour mark (we're overachievers!), I took the unit and stickers off of him.  I thought he might do better with just me doing it instead of strangers at the hospital.  He still cried and fought me but it was over pretty quickly.  When we returned it to the hospital they reviewed the recording to make sure it was good enough and then it was processed and sent to our doctors.

Today Eli & I went to Evansville (what a madhouse!  You'd think it was the only mall for miles & miles around.  Oh, wait...).  Eli was fine when we got there but turned on his screamer when they tried to do crazy things to him, like weigh him, take his blood pressure, and O2 saturation.  Heaven forbid they try to listen to his heart with a stethoscope.  We also had to do an EKG.  He turned into a double octopus on crack.  We didn't give up and finally got what we needed (mostly). 

Dr. Steinberg was very pleased with Eli's progress and weight gain, and asked several questions about his activity level, sleeping habits and overall health & attitude.  He had reviewed the reports from the Holter monitor & the EKG;  they showed that Eli's average heart rate is 71, much lower than that of a normal 13 month old, and his rhythm is still junctional.  Everyone agrees that if he was going to return to a normal rhythm on his own it would have happened by now.  He needs a pacemaker. 

The good news is that because he is doing so well, we can wait longer before doing it.  Dr. Steinberg thinks we could possibly wait until Eli's third surgery and do both at the same time.  If he starts having trouble gaining weight, is easily agitated (without medical personnel bothering him), or just has general problems, then we'll re-evaluate.  For now the plan is to see Dr. Kumbar at the end of February to do an echo (ultrasound of the heart and its vessels) and then back in June to see Dr. Steinberg again.  We'll probably get to repeat the Holter monitor prior to that visit as well (oh joy of joys!).

At that point we'll begin discussion about a heart catheterization prior to his third surgery.  That surgery is called a Fontane completion.  The surgery he just had in September is called a Hemi-Fontane (the two are essentially the same surgery but it's too much to do at one time so it's done in two stages).  If given the chance to schedule, they don't like to schedule the Fontane procedures in the winter months because of the increased risk of respiratory complications.  After today's appointment it looks like Eli could have his Fontane completion by the fall of 2012.  Nothing is set and we'll have to see what happens over the next few months.  Of course if Eli's condition changes, they can always proceed with the pacemaker.

So, our expected news is that, yes, he needs a pacemaker.  Our good news is that we don't have to do a pacemaker as soon as we were anticipating.  Our not so good news is that his third surgery may be sooner than we were thinking (we were hoping for 18-24 months after the second one, which would have been summer 2013-ish).  That isn't a huge deal, I suppose, but it seems like 2011 was filled with major surgeries, procedures, & really heavy stuff.  I guess I was hoping for a little "time off" before the final stage.  We know he has to have it done, so in the long run, when it happens doesn't make a big difference.  As long as he's growing and functioning well, we're happy. 

Overall today was a very good visit.  I had fully expected to leave there with a date set for pacemaker placement so to find out that can wait indefinitely was very uplifting.  Dr. Steinberg said something very nice and encouraging as we were leaving..."Keep up the good work."  Dr. Amy says that to us a lot too.  Eli does all the hard work, but it does feel good when the efforts Bryan & I put in are acknowledged.  We're just so happy that he's here to keep us up at night, drool on our furniture, and torment our dog!  We're very blessed indeed.

Thanks for checking in!  I'll get another post up about our Christmas festivities, but until then we'll continue to cherish  Every Little Beat... 


1 comment:

  1. Oh Jessica, as I'm reading this, I feel like I'm right there with you... Eli is such a blessing and I'm so thankful for his little life. You ARE doing a great job, you're an amazingly dedicated mama and Eli and Zachary are so blessed to have you as their mom! Have a great Christmas!