7.26.2015

Noah's Pacemaker Revision Surgery

The battery in Noah's pacemaker had had it.  It lasted a little over 7 years, so we can't really complain.  The surgery is technically called a "Pacemaker Revision".  I originally thought they would take out the old pacemaker, pop out the old battery, pop in a new one, and put that pacemaker back in.  

Nope, they take the whole pacemaker out, and put a whole new one in.  With the way the technology is improving, that totally makes sense. 

Noah and I (and Abigail) headed down to the children's hospital the Friday before the surgery, for his pre-op physical.  He had been dreading being "stuck"...but he did great on his blood draw.  They also needed a chest x-ray.  Along with them taking a few other stats, that was it...but it took almost 3 hours.  

While we were in "the big city", and so Noah could get to do something fun...he begged asked if we could please go to the Apple Store.  So we did.  



Neither of us had ever been to one before.  It was neat!



For the surgery, we had to be at the hospital at 6 a.m. Monday morning, which meant we needed to leave our house at 4 a.m.  So the other five kiddos went ahead and spent the night at LaoLao and Papa's on Sunday night.

Noah was nervous about the IV being inserted and being taken back (away from us) for the surgery.  He needn't have worried about this part.  Once they gave him the Versed (aka "sleepy juice") he was very loopy.  They gave him the Versed, a "Child Life Specialist" came in the room, and while Noah played a car game on the iPad she brought, a nurse inserted the IV in his left hand.  He didn't notice a thing.  In fact, a little later he glanced at his left hand and said, "What is that in my hand?"  When we told him it was the IV, he said, "It didn't even hurt!"

And then we replayed that exact. same. scenario. 4 or 5 more times over the next 15-20 minutes.  It. was. so. funny!  Noah would look at his hand, "What is that?" etc., etc., And then Jas, playing with Noah, said, "Noah, what is that in your hand???"  Noah looked at it, "I don't know!"  Noah has had fun hearing about all of this since then...now I wish we had video to show him!

They told us the surgery would take about 1 hour and he would be "out of sight" for 2-3 hours.

But once they got in there, they discovered that one of the "leads" (wire that connects the pacemaker to the heart) needed to be replaced.  So the surgery took longer (it was 5 hours until we got to see him again), and his incision was much bigger than it would have been.  They had to follow the bad lead up close to the heart, cut it off as close as they could (leaving the ends that were attached to the heart still attached, lest it cause bleeding/problems if they took them off) and attach the new lead.

I don't know if they always do this in children, but in Noah's case his pacemaker has always been in his abdomen, just to the left of his center line.  (Not up in the chest like they do for adults.)

When they wheeled Noah back all he had was that IV in his left hand.  When he came to his room in the CVICU (Cardiovascular Intensive Care Unit) he had quite a bit more going on:  An I.J.(Internal Jugular) "central line" on the right side of his neck (and IV/catheter into his jugular and straight into his Superior Vena Cava (I believe I have that right, or else it was the Pulmonary Artery)...due to Noah's heart physiology being different because of his Fontan).  He also had an "A-line"IV in his right hand, an IV in his left foot, and a nasal cannula keeping him in good supply of oxygen.

I had been so intent on getting Noah to and through the surgery, that I had not properly thought through what the recovery would be like.  It has been (and **is**) much harder than I was expecting.  It has kind of blind-sided me, which is totally ridiculous, as I totally should have expected this.  It has been some harder because the incision was twice as long and the internal Messing Around they did (that is a technical term) was increased because of the new lead.  HOWEVER, this would have still been hard even without that.

Yes, Chippyye and blankie were allowed to come.


The nurses - looking very pleased with themselves - told us they had saved something for  us.  Noah's old pacemaker!


 It is smaller than the bulge in Noah's abdomen has felt for 7 years:





Noah couldn't get out of bed until the day after surgery.  He couldn't even sit up by himself, or reposition his bottom for a couple days.   It is a good thing he only weighs about 65 pounds right now.  A four inch incision and Messing Around right in the middle of your core makes it hard to do those things!  In fact, Noah is still talking in a soft-spoken manner now (6 days post-op) because it hurts to talk normal/louder.

Daniel had the brilliance to get a homemade PVC light saber/sword for Noah to use as a cane the first couple of days he was home (why didn't I think of that!?!?).  It was very helpful.  And Noah was walking around looking like a 100-year old man for the first couple of days.  Then he was able to stop using the cane, and stood up a little straighter, and looked like an 80-year old man.

He currently can walk at normal speed, but it still somewhat hunched, and we say he is walking like a 70-year old man.

It takes core muscles to keep good posture...and it hurts him yet to stand up real straight.  But we look forward to Noah getting younger and younger over the next few days!





Jas and I slept on this in Noah's hospital room

The CVICU staff was just wonderful.  We had three nurses during Noah's stay (Scott, Danielle, and Shannon) and were extremely pleased with all three.  And the cardiologist on duty at the hospital that week was **our** cardiologist (Dr. E), whom we have loved for almost 10 years now. (We joke that we've known him longer than we've known Noah, because we met and consulted with him about Noah before we even were able to bring Noah home!)

The surgeon, Dr. C, is the same one who did Noah's open-heart surgery (his Fontan) in April, 2006, when Noah had just turned 2.  He is great...and I was so glad to have him again.  His bed-side manner leaves a little to be desired, but he knows what he is doing.  And he is a smidge Type A.  After watching his interactions with other doctors and nurses, I would totally not want to work with him...but I wouldn't want anyone else doing surgery on my child!


We were able to leave Noah's ICU room and the hospital about 24 hours after he first entered it.  

Heading home - woohoo!



As Elisabeth and Noah talked about what he should take with him to the hospital, she made this list for him:



And he didn't use any of it.  All he could do while we were still at the hospital was lay as still as possible so it wouldn't hurt.  (This makes it sound like they weren't giving him pain meds...and they certainly were!)

Noah felt nauseated also.  Thankfully he was never sick, which would have hurt/been bad with his incision.  They gave him a couple different meds to help with this.  Even though he'd fasted since Sunday night, he didn't/couldn't eat anything until Tuesday morning, because he felt nauseated.  But when we told him Tuesday morning that they wouldn't let him go home until he showed them he could eat ok...he became a little more motivated to try!


Our sweet M-family friends brought Noah a goody bag of playthings before we headed to the hospital.  Also, the C family and the T family brought over cards and goodies the night before we headed down.  


And then, we were blessed to be visited at the hospital by the R family (Ava happened to have a Dr. appt down in that city that day!) and by Mrs. Melissa (who happens to live in that city).  We felt very loved!



Noah slept in our room the first three nights we were back home...and during the day this was his headquarters:



Do Noah's friends know him, or what?  The C family and Mrs. Melissa brought these for Noah.
Noah's post-op appt was on Friday, 4 days post-op.  Noah had an EKG and a physical check of the incision.  The doctor (not our normal cardiologist) said the incision and everything looked great.  "If I didn't know he had a pacemaker, I wouldn't know he had a pacemaker."  Thankfully, Noah is not totally pacemaker-dependent.  His underlying rhythm takes care of most of the work during the day.  The pacemaker normally does most of its work at night, pacing Noah's heart at 60 beats/minute.  (His heart rate used to dip down into the 30's at night, before he had the pacemaker implanted at age 4.)

Because the pacemaker is not being used all the time, the first battery was able to last for 7 years, 3 months.  Of course Noah - being the math guru - has crunched the numbers and said that if this pacer last for 7 years, he'll be 18...and can drive himself the next time he has this surgery.

He said he would let us come along, though.






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