Adventures with Ellie: Pacemaker?

Ellie has been improving each and every day here in Boston. After getting the sleep study results on Saturday, there was extensive discussion about Ellie’s airway. She was originally set to go to the OR on Monday for a quick procedure to dilate the subglottic area, however, it was determined that she’d need a sleep study with her trach before we could really know if she’ll be able to breathe during sleep without the trach. So they cancelled the procedure and we’ll follow up with an ENT (ear/nose/throat) doctor in Ohio once Ellie has completely healed from surgery to do another sleep study and assess where she is now before we make too many changes to the trach plan. She has been able to be on the artificial nose through the day, though, which is awesome. They put her back on ventilator settings through the night. Yesterday, we were able to unhook Ellie from all of her wires and carry her around for a bit. In fact, our nurse was so in love with Ellie that she took her out of our room to show her off to the other nurses, searching for someone who has had a bad day and “could use a cute baby to cheer them up”. Boston has completely different sternal precautions post-op than we had in Cincinnati, so we’re actually allowed to hold Ellie up on our shoulders (her favorite way to be held). We just can’t lift under her arms or with her arms for at least the first month.

She's back to using her rattle like a tamborine

My phone doesn't do justice to how wonderful her coloring is.

She's much more awake these days - she has to feel better with a new heart!

Ellie had a bedside echo done yesterday, too. It was absolutely amazing to see a 4-chambered heart beat on that screen for the first time. I had to take pictures… I wish I’d taken pictures of her broken little heart on the echo screen so that you could appreciate how amazing this image is.

We were all set for a discharge on Wednesday and would need to stay in the area for a clinic follow-up here on Friday, but last night Ellie went back into complete heart block. Little stinker. She’s actually consistently showing four different heart rhythms – she’s just fluidly moving from one to another. They still think this is transient, but she’s now much more likely to have a back-up pacemaker placed before we go home. I know that placing a pacemaker is no small deal, but compared to last week’s surgery… this is nothing! We’ll keep you posted on that. Her pacing is really the only thing that’s keeping us here… and we have no idea when she’ll level out and what that’ll mean for additional surgeries. Placing a pacemaker on an infant is still a procedure where they’ll need to open Ellie’s sternum, just not completely open like it was for her last two heart surgeries. A pacemaker in little ones is actually placed in their abdomen – not under their collar bone (like in adults). Right now we’re just waiting to see where she settles out.

Her echo yesterday - for the first time, I saw an echo that didn't look like a hot mess!

In the stroller with almost NO equipment! It was so much lighter this time.

For comparison, this is how we traveled last week... backpack with oxygen tank... plus humidifier in the cup holder, suction machine, emergency trach care bag, pulse oximeter hanging off the side, ventilator... enough tubing to drive a person crazy... and the regular diaper bag stuff in a backpack on Brandon. This is why having Ellie on an artificial nose during the day would be a life changer for us!

So far Ellie has already eliminated one of her medications (sildenafil – a.k.a. Viagra). She may also greatly reduce her dependence on Lasix (a diuretic). She hasn’t stormed again since they started her back on propranolol (a beta blocker that she’s been on since late November for storming) on Saturday. Yahoo! We are really making amazing progress… just kind of holding tight to see how she does with her heart rhythm.

We are missing our boys like crazy. It was different when we were just 2 hours from them and could see them each weekend. Now that we’re 13 hours from them, it feels like they’re forever away. They are having a great time, though. They are camping and fishing and hanging out with their friends. They went to go visit my grandma and asked her if she was going to have a superhero party for her birthday (she turned 86 on Sunday). Grandma got a kick out of this. So last night, the boys went over with mom and dad and brought Grandma superhero cupcakes for her birthday. I love this! Such sweet little stinkers!