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.






7.17.2015

Elisabeth is Twelve!

I blinked.




All I did was blink...and my Elisabeth went from this....




....to a twelve-year old girl...young woman.  Neither one of those descriptors feels quite right to me now.  







Elisabeth has been growing and changing so much lately.  Physically, yes, but even more so in her interests, thoughts, abilities.  

She has also been venturing out of our nest more.  Without me.  (sniff)  It is totally appropriate...but that doesn't mean it is easy for me. 
This right-brained child of mine is totally and completely polar opposite of me.  She would be very glad if we signed her up right now for classes/lessons in...

- singing
- painting
- gymnastics
- dance
- sewing
- and the list goes on...and on...

Anything creative or artsy?  Right up her alley.  Since we don't have the time or money for her to do all those classes/lessons, we've tried to cram some of it into her summer for her.

She attended art camp for a week (in the mornings for five days).  She brought home some really pretty pieces that she'd created:










Elisabeth also got to attend a "Chopped Challenge" with our local 4-H office.  (E loves to watch Chopped whenever she's at LaoLao's!)

She was paired with two other team mates (she was kind of bummed that she didn't get to work on her own).  They were responsible for creating an appetizer, entree and dessert.





She didn't know one other soul who was attending.  But she knew she wanted to go.  I was so proud of her. 


As loquacious as she is here at the house...she tends to the quiet side out of the house.  But she didn't let that stop her from going.  (At the last minute before I left her at the 4-H office, I realized I wanted her to be able to reach me if she wanted to, so I handed her my phone.  She took these pictures with it.)





This seems funny to me, but as quiet as E can be outside the house, she has never been scared of performing before a crowd.  Not since she was 4-years old and led her dance troupe out onto the stage at our town's festival.  Or her baton-twirling recital.  Or any of the musicals she had a role in with our previous church's children's choir.  Or any of the five piano recitals she has now performed in, in front of quite an audience.  Things that you couldn't pay me to do...she volunteers to do, tries out to do...is excited to do!


Her current job with this description is her role in our church's VBS this week.

First of all, Elisabeth is too old to attend as a student anymore (sniff), but she wanted to be there serving in some capacity.  When we found out that she was chosen to work on the Music team, she literally pumped her fists in the air with excitement.  


Practicing...getting ready for VBS


"Music" may be a misleading title.  What she and the 3 others do is lead the VBSers in the worship songs...which have motions.  She stands on the stage in front. of. everyone.  (I would DIE a thousands death before I would do that.)




She has had the DVD for two weeks practicing the songs/motions.  She has been very diligent in  practicing and getting ready, and when VBS started Sunday night, she did great.  It helps that E is keeping in mind that she is not "performing" per se...she is just leading the children in worship.  This isn't about her...it's about HIM!  Big difference.  













In order to celebrate her 12th birthday, Elisabeth and I headed to a nearby city for a Saturday outing...just the two of us.


A selfie (my first!) to start our excursion 


We had such a good time.  I really just thoroughly enjoy spending time with Elisabeth.  She is so sweet and has a great sense of humor.  


We went shopping, and then fro-yo-ing...






...and then shopping some more...




...and then had supper at Longhorn (which she'd been talking about for months!).





We had a blast together...and strolled back into our house at, ummmm...about 11 p.m.















Watching Elisabeth grow into the Godly young woman that she is today has been such a privilege.  She has so many thoughts, dreams and ideas about how the Lord might use her in the future....





...and I am excited to see how it all unfolds.  So thankful for this front-row seat in her precious life!





7.16.2015

VBS Crazy Hair Day

The kiddos LOVE this special theme night at VBS every year.  (Well, some of my kiddos do...I'll leave it up to your deductive reasoning to figure out who isn't as crazy about Crazy Hair Day)


Daniel has kept his hair longer-than-normal for him, JUST SO he could do this for Crazy Hair Day:


He really got some height on that thing...thanks to some Nuclear-powered gel!

And Elisabeth has been wanting to get hair chalk for weeks, to get ready for Crazy Hair Day:
In the end, it didn't show up on her beautiful black hair as much as we'd hoped.


And because of the fact that Jas and I are both working at VBS this year, Abigail and Gabriel are there every night also.  

So, of course, we had to get them in on the fun also.


I started by banding A's hair that morning, to lengthen her curl pattern and get some good height...and then stuck two different colors of barrettes in the 10 different sections of hair.  



I totally could have used a different shape/color of barrette for every one of those sections, and truly make it look crazy. 



But this was Crazy/Cute, instead of Crazy/Ugly:



Daniel has been planning his hair for months, AND he has been planning mine for months also.

He plays with my hair sometimes while I read-aloud to them at night.  He hit upon a favorite hair-do, which he titled, "Old-Fashioned Boy Hair."  He was so excited to do my hair like that for VBS.






But when it came right down to it, he couldn't resist adding some of A's colorful barrettes to his creation.  As we all arrived at VBS that night, he told me to make sure I told everyone that he had done my hair!


And then....we really started getting our "Crazy Hair Day" A-game on!

I have been meaning to cut G's hair for a couple of weeks, just hadn't gotten around to it yet.  So when the children and I cooked up an idea at the breakfast table that morning, I thought, "Why not?!?"


So I went to town on G's precious little head with the trimmers:





He has thoroughly enjoyed the attention...but he may be upset with us in the future when he looks back and sees what we did to him!





And then the creme-de-la creme of Crazy Hair Day:

Complete with A's 1st birthday tiara!


Yes, that is a picture of a Real man...and great daddy!


7.13.2015

One Week Until Surgery - Our Prayers for Noah

Noah's surgery is next Monday, and we go to do his pre-op appointment on Friday.  
He doesn't talk about it much...but it is weighing on him. 



I am praying that this experience teaches Noah to rely on the Lord's strength in a way he never has before. 

I pray Noah will take his fears and worries to the foot of the cross...and leave them there, in the very capable hands of Jesus. 

I pray that He will look back on this as a time when his faith and trust in the One who created him grew exponentially. 

And finally, I pray that Noah will have a peace that passes understanding as he heads into this surgery, knowing how much he is cherished by his Heavenly Father.



7.07.2015

Two Surgeries: Jas...and Noah

 I mentioned in the Miscellany Monday post that two of our peeps have medical stuff going on.

Here is the scoop:

Jas had shoulder surgery on Thursday.


 To be more precise, he had a repair of the Right Labrum.  He tore it five years ago.
We knew exactly when he did it.  But we didn't know how bad he had hurt it...not that it was torn.

But it had start hurting worse.  And it was affecting his neck on that side.  And then the past few weeks when Jas would move just right (meaning: just wrong) it would almost drop him.  It was horrible to watch...I can't imagine how it felt!


I cannot believe how well he has handled all this.  He has really been a trooper.

He was a more tired than normal for a couple days post-surgery...but that is about it.

He wasn't trying to be a hero or anything, but 24 hours after the surgery he cut his pain meds in half...and stopped taking it altogether about 36 hours after the surgery.  (They gave us enough for him to take it every 6 hours for FIFTEEN DAYS!  wha?!?  Thankfully, our sheriff's office has a place to drop unused prescription meds.)

The "Iceman" has been a wonderful tool.  It is a little cooler that is hooked up to tubing and runs to pads that fit on his shoulder.  It circulates ice-cold water around his shoulder to help with inflammation.



He has a follow-up appointment with the doctor next week...and then it will be determined if he needs physical therapy or not.  Some people do, some don't.  I'll be real surprised if he needs therapy.




 Jas trained us to feed the cows and chickens, but he was back at it about three days after surgery.




I wouldn't at all be surprised if LK ended up doing something in the medical field, either with people or animals




Now Noah....


On Wednesday, all the kiddos and I headed down to the state south of us for Noah's annual Electro-Physiology appointment (the "electrician" for his heart).  

Short story:  It is time to replace the battery in Noah's pacemaker.  This means a surgery and an overnight hospital stay.  This also means...Noah is very anxious.  

He had his pacemaker inserted 7 years ago (in April).  We've known all along that this day would be coming, and he has honestly been anxious about this for years.  He is my little worrier.  Just like his mama.

But here it is.

And he is not looking forward to it...to put it mildly.  

It has actually helped that Jas just had his surgery.  But only a little.

We just found out this morning that his surgery is scheduled for Monday, July 20th.  

I think we're saying all the right things to him.  And he knows (pointing to head) that - technically speaking - this surgery is no big deal (especially compared to the two open-heart surgeries he's had), but his heart hasn't figured all this out yet.  









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