Sedona Getaway

 We were super happy to get out of the subhurbs this weekend and drive up to Sedona for the day.  Sedona will always hold a special place in my heart since that is where Jared and I spent our honeymoon.  Beyond that, the scenery is just so ridiculously amazing, especially the red rock mountains and the changing leaves on the trees around Oak Creek Canyon.  We really enjoyed spending the day together, and I absolutely treasure those times as a family.  I'll just let the pics do the talking, we could have stayed out all day, but figured it would be wise to head back to town at some point!

A Plea to the Tooth Fairy

 Jordan has lost both front teeth in the last few weeks, but this last time around, he couldn't find the tooth after he lost it!  I didn't tell him to do this at all, but he wrote this sweet note and pt it under his pillow....his picture is my favorite part!

From Pre-Op to Post-Infection

Allrighty, so here is the progression of James' heartline, starting with a picture of him pre-op on 9/29, all the way to this morning, 11/10.  If this kind of stuff makes you squeamish, just beware.  I realized a few things as I was compiling these pics.  One, I didn't take any pics of his heartline after we got home from the hospital but before the infection hit; that's unfortunate, as it started to look a lot better before it got a lot worse.  Two, I knew James had lost weight during his hospital stay, but I didn't realize how obvious it looks if you compare this first picture with the ones near the end.  That makes me a little sad, but considering I just got after him for stealing a piece of Halloween candy, I think he is over his food aversions that have plagued him since surgery.  

I'll give a few annotations and set the timeline as best as I can from the dates on the picture files.  

9/29, the morning of surgery.

10/3, the day we came home from the hospital, just after they removed his dressings.

10/23, the picture I sent to the surgeon's PA to see if this looked like infection, 2 days after his trip to the ER.

10/24, James started taking his antibiotic this evening, and I think it is crazy, how much the incision is bubbling-even from the previous picture to this one, it got a lot bigger.

 
10/25, still pretty "bubbly", nothing weeping though.

 
10/27, hard to tell in this shot, but the bubbling on the lower part had started to go down.  Visited the PA again, she agreed it looked better though not out of the woods yet.

10/30, the redness is dissipating a bit, and while you can still see bubbles, especially on the top, they are decreasing. The PA took out the top stitch yesterday, and I think it helped.

 11/2, looking a billion times better! Some discoloration, but the top part is scabbing over, so to speak, and it doesn't feel like there is any liquid trapped there any longer. The bubbling on the rest of the incision is gone.

 11/4, last day of antibiotics, and the "scab" on the top of the scar fell off.  It was really like a thin, translucent layer of dead skin cells.  The scar underneath was much smaller than I anticipated, which is great news!

 11/10, we have been off antibiotics for just shy of a week, and it looks good-haven't had any issues.  I will say, the bottom inch of the incision looks just slightly redder, and feels a bit different, making me question if the infection is flaring up there again....we will watch it for the next 48 hours given that he has no other signs of infection and get in touch with the PA as needed.  Not sure if anyone else would notice this, but his chest is much less concave as it was before surgery.

 That's it!  Interesting to see the progress, and so glad James has overcome this recovery hiccup.  He went to nursery for the first time since September yesterday, and though Jared had to hang out with him to help him acclimate, he did great!

Choir Concert!

Karianna had the privilege of performing with Bush's children's choir at a combined concert at Red Mountain.  She was one of the youngest kids there, but really seemed to enjoy herself as a representative of Bush.  All the feeder elementary schools and junior highs had representative choirs there, and it was a joy to watch Karianna perform on a high school platform!  I was so proud of her, she has such a gift with singing, and already talks about all the choirs she wants to be in throughout her schooling.

 Can you find Karianna?  She is in a black dress.

I personally found it so interesting to be back at RM, in an auditorium that I personally performed in many, many times.  I was able to say hi to Mr. Johnston, who is still directing the choirs at RM.  I found myself ruminating over what it is like to be a teenager in high school who really doesn't know who she is, so she affects the person she thinks she is supposed to be. I may not be the most confident person on the face of the planet, and I certainly have a lot of self-esteem to gain as a mother, but I am so grateful to be past that stage of trying to figure out, at a very base level, who I am, what I love, and where I am meant to be in the world.  I hope and pray I have the wherewithal to help Karianna navigate this journey with grace.

Behind Again

I feel like I have been so focused on getting James healthy, I have neglected blogging about the rest of the family and the kids' activities!  I have a lot of catch up to do, which will hopefully happen next week once we get final appointments and Halloween out of the way.

De-Escalation

That's a lovely title for a blog post.

I am so thankful to report things are looking better for James. Insert sigh of relief.

The last week has been unbelievably stressful.  We have been back and forth to the hospital every other day.  We have visited the speech pathologist twice and the cardiologist once.  We have pressed James to drink his medicated cocktail multiple times a day, comprised of 4 prescriptions.  We have slowly gotten James back to a normal diet--I think I would pin Wednesday as being the day he finally decided to eat normal food for every meal (though not quite the same portion sizes). At his last doctor appointment, he was back up to 27 pound, having dropped from 29 to 25 during the course of this illness.  He is only waking up once a night now in tears, and is sleeping in his bedroom again.  He doesn't grimace in pain anymore, though he will still tell us not to touch his heart line.  He is smiling more and more, and being just a bit naughty.

All in all-he is getting better.  :)

Our run of antibiotics will conclude on Tuesday, and then we will carefully watch James the rest of next week to see if the infection flares up again, which is pretty common.  If not, I think we can safely say we can get back to normal life with only a few minor areas to monitor.  I am so grateful to have my James back, almost to his regular state.  He still can't laugh without feeling some pain, though his quiet little giggles have been making an appearance.  He can't cry or giggle loud at all-his vocal cords are still trying to recover, but we think that is coming along.  His incision looks SO much better-I'll post a stream of pics to show the progress it has made in a little bit, though it won't be for the weak of heart.  The bubbles have all disappeared, as has the redness other than the top inch or so of the incision-and even that looks like it is scabbing over, so to speak, and getting smaller everyday.  I think having that stitch pulled really helped-that really seemed to be the turning point to the infection getting better.

I feel like so much stress has been lifted from my shoulders.  Life has kind of been put on hold for a long time, and especially for the past week.  I totally spaced on a lot of school-related things for the kids, our schedule went out the window, and I don't think I cooked a single dinner this week.  Jared and I have been utterly exhausted in taking cared of James and the kids, rarely going to bed before 1AM because the mental worry has been so extreme.  We have a ways to go before things feel back to "normal", but I feel like we have permission to start getting there and that is such a nice thought.  We'll have more doctor appointments next week, but after that, I think we might be done with them for a little while-and perfect timing, with the holidays right around the corner.

I am so thankful things are getting better.  Such an amazing blessing for our family and for James.

Escalation

We found out today that James officially has an incision infection.  He has spent the last two days trying to recover from his fever, and while he hasn't thrown up since the night we went to the ER, he has zero appetite and is very lethargic and irritable.  I have had him sleep in my bedroom again as he tends to wake up in the middle of the night, several times, crying.  We have been giving him pain meds every 4 hours, which has also been hard with his aversion to oral meds....that has gotten worse in the last two days for some reason, to the degree that we had to hold him down and stick the syringe in his mouth the other day, blowing on his nose to get him to swallow....that was a hard night.  He is so sick that he can't understand how important it is for him to take his medicine, and his natural aversion to it doesn't help at all.  It makes me so sad.

Anyhow, last night Jared and I felt like his incision was looking redder, and the top part especially was becoming more enflamed.  A few spots had bubbled up a little bit as well.  I called in to the surgeon's on-call team Friday morning, and Dr. Nigro's PA asked me to text her pictures of the incision rather than just having us come in.  Part of me wanted to say it wasn't so bad, but the other part of me knew I needed to get him checked out.  I texted her two pics, and she verified that it looked infected and to come in right away.  Jared took work off and came home to help transport us back to PCH--James was not happy about that, though I tried to focus his attention on the things he does like about PCH (thankfully, there are many things).  Upon seeing both Kristin and Orlando (two of my favorite PA's in Dr. Nigro's office), they verified it was never a vial infection, but an incision infection.  His CBC count from the ER was apparently seriously high, his incision just hadn't caught up to it yet.  His blood culture came back negative, which thankfully means its not in his blood stream or the bone.  However, his incision is definitely infected and it is not imperative that we treat this aggressively before it does move to the blood or the bone.

The doctors put James on a very heavy antibiotic, and gave us specific instructions on dressing the wound should it open (there is an extremely high chance this will happen over the weekend given how big those pockets of liquid have gotten).  If it opens a ton, we have to rush him to the ER for wound care and to biopsy the tissue/liquid.  Kristin told me to text/call her at any point this weekend if it gets redder or if the fever gets worse.  I am seriously stressed out about this, as this weekend is so busy with the Primary Program, yet my son comes first....and I am so worried this is going to massively set James back in his recovery, especially if it gets worse or opens.  The best we can do now is follow the doctor's orders and not freak out before anything freak-out-worthy happens....and even then, we probably shouldn't freak out.

So we are home now, just keeping James quiet, hydrated, medicated, and calm.  You can tell he is hurting, and I Hate that.  Thankfully, he seems to be doing better with meds today, as we went back to OJ, just not thickened at all....he earns a single skittle for each sip he takes, which is funny because he doesn't eat them-he just carries them around in a bag.  Hopefully this method sticks!

Right now, we are planning on having Jared's mom come sit with James while Jared and I go to church for the primary program...if his incision opens before then, I have no idea what we will do, as there is no one else who could possibly direct the kids the way I can.  Can't worry about that too much now, just very much on my mind.

We head back to the surgeon's office on Monday, to the cardiologist on Tuesday, and back to the surgeon on Wednesday, all to keep a very close eye on this.  I really hope this is the only "escalation" post I have to write.

Pushing Along

Just a mini update on James.  He had a fever all day Wednesday, as well as Thursday morning, but it went away around mid morning and hasn't returned except for a slight warming Thursday night-not even enough to constitute concern.  He isn't eating much at all, but thankfully he is drinking normally.  He is very sensitive to having his ribs/mid section touched at all.  He laughed yesterday and immediately grimaced and teared up in pain.  I am sure throwing up on Tuesday really sent his still-recovering ribs into a downward spiral, I can barely lift him up within out him telling me "Stop, it hurts me!"  Those are seriously sad moments.  I think he is experiencing body aches to some degree, and needless to say, he has been exceptionally ornery to a degree I don't think I have ever seen in a kid.  I must admit, it has been very hard for me to stay emotionally sane.  I don't want to see him in pain, and yet I have to force him to drink his medicine.  I hate that his body hurts him, and I just want to snuggle with him all day, but I don't think he views me as his safe spot right now.  He has pushed and kicked at me more times than I care to admit, and he told me to go away a few times....granted I had his orange juice in my hands during those time, but it still stung. His scar seems a little redder than normal, but I can't tell if its red, ie, a bad sign, or red, ie, my ribcage is hurting and my fever is making my body flushed.  Something to watch, that's for sure.  I am so ready for James to start feeling well again.  I miss his smiles.

Happy Birthday Jared! Want to go to the ER to Celebrate?

Yes, my title is sarcastic. It is my attempt at humor that is not working so well on little sleep!

Yesterday was Jared's 34th birthday, and we actually secured a babysitter so we could go to Olive Garden for dinner and then goofy golf.  The kids were all in bed when Jared's mom got there, and we didn't think a second thought about leaving.  2 holes into the 18-hole course, we got a text from Jared's mom saying James was running a fever and we should probably come home.  James had been acting irritable earlier that day, and refused to eat half his dinner, but I certainly did not anticipate anything was wrong other than him being a toddler recovering from heart surgery.  We zipped home to find James clearly upset and acting like he was hurting.  I had given him tylenol and motrin shortly before leaving, so I was confused as to why he should be feeling this way.  His temp was 100.3, not high enough to result in a trip to the ER, so I sponged his head for a while, pressed some liquids in him, and rocked him to sleep.  I called the cardiologist on call and they advised us to watch him for a fever higher than 101.5 and any other obvious warning signs.

Around 10:45, Sara came out to tell us James was crying.  Jared went in to comfort him, only to call me a moment later saying James had thrown up.  A few things clicked into place, and i realized this may very well be a stomach virus-it made sense with how he had been acting previously.  We cleaned him up, gave him a bath, and retucked him into bed.  He fell asleep right away, but woke up around 11:30 crying again.  I brought him out to the family room where he threw up very explosively all over the floor.  I took his temp and it had spiked to 102.4.  I called the cardiologist again, and they advised us to come to the ER right away.  I admit-I was super emotional.  I knew it was coming, but as in the past, it is always very, very difficult to go back to the hospital after heart surgery, especially when something could be wrong.  Jared's mom thankfully came back over to be with the other kids and Jared and I took off for PCH around 12:15am.  This would be the last time James threw up, but he was still so hot-it was necessary.

We arrived around 12:45 and got checked in very, very quickly, as PCH really streamlines cardiac kids.  I was expecting this whole experience to be terrible for James as he has a bit of PTSD, so to speak, regarding hospital and doctors.  He very obviously didn't want to be there, but I was surprised how often he acquiesced to what the doctors needed him to do. He let them take his temp under his tongue with barely any resistance.  Simple, I know, but for him it was one of many amazing feats.

Over the course of the next 4 hours, they drew blood for labs, did a chest X-ray, did a blood culture, monitored his SATs and blood pressure, assessed for organ issues, and monitored for plural efusions (I spelled that wrong), which is a common situation with post-op heart patients.  All the tests came back negative except his CBC count, which was elevated.  They deduced he was fighting off a virus/infection.  His heart and lungs looked great, as did his other organs.  They didn't feel it was respiratory since his SATs were awesome.  They only faltered with his blood culture, which wouldn't get back for 48 hours and which could reveal a bacterial infection in his blood stream. They gave him a round of IV antibiotics to be safe, and if that test comes back positive, he'll have to go in for more of that.  They were able to place an IV relatively quickly, which was helpful-his lines blew during his hospital stay earlier this month, so I was afraid they wouldn't work so well.

After a round of zofran, tylenol, and antibiotics, they cleared us to go home with a cardiology check up on Thursday, which was already scheduled. They talked to Dr. Garn and he was comfortable with us leaving as well.  We were so utterly relieved nothing else was wrong.  His symptoms could very well be signs of an infection in his incision/heart/bones, all of which could be devastating in his current recovery state.  We feel very blessed that nothing like that has happened.

We got home around 5:20 this morning to relieve Jared's mom.  I slept from 6-7, though Jared stayed up with James, who would not go back to sleep until he got a strong dose of pain meds at 7-after that, he was out until 11:30.  Jared and I have been trading off resting today, and while helpful, he and I would both admit we feel like zombies.  We don't really care, we are just so glad James is okay.

James is still fighting off that fever and infection, not eating much of anything and just concentrating on drinking fluids and his medicine.  He is not happy, and he very obviously has a lot of body aches-even just picking him up gently makes him whimper. The top stitch of his incision keeps catching on his scab or his shirt, and I think that makes him hurt as well.  I feel so sad for him. It is very difficult to watch your child be in pain.  We are doing what we can to relieve it, and are just waiting for this period to pass.

What a difficult night.  James, you scared us, but we love you more than you know.  So glad you are okay.

Sweetness

Such a sweet little moment. I love it when Karianna takes initiative to care for Jackson.  He loves her to pieces.

Jackson: 11 months

Well, this will be a short update since I just updated Jackson a few weeks ago!  Jacks continues to plow along to his 1 year mark next month-super exciting!  Just a few tidbits to note:

• We call Jackson "Jacko Smacko".  He does indeed like to hit things, people, food, water--whatever is close.  What can I say-the name fits!
• Jackson is cruising everywhere and is utterly proud of himself every time he catches someone eye while doing it.  He is so fast at crawling now and has a funny little half bear, half traditional crawl that just gets him everywhere.  He hit that stage where he doesn't want to stand with someone or on his own-he immediately wants to drop down and just crawl.  
• Jacks loves graham crackers.  That is his favorite food now.  He rarely eats jarred baby food any longer, just eats what we eat in bite size amounts.  He stays away from foods that have high risk for allergies, honey, and milk, but otherwise he is pretty open to much of anything.  Especially if it is called "graham cracker".
• Jacks is going to bed now by 8 at the latest and sleeps until 7.  I nurse him and he generally goes back down by 9 until 11, then up until his 1pm nap.  It is a lovely schedule, only getting tricky late afternoon when he starts to get tired but I keep him up so he is ready to go to bed on time.  
• Jacks talks and talks and talks and talks.  He claps, gives high fives, waves hi and bye, reaches out for people, points at things in books, and has started to point to things in the distance.  He hates vacuum cleaners and brooms, and loves his baths with all the energy that exists in his little body....it is so funny to watch him smack the crud out of a tub full of water.  Jacks has such a loud cry, and he tends to hold his breath when he gets agitated-he digs himself down into the ground, its actually kind of funny!  Thankfully he doesn't exhibit these moments too often, and I feel he still identifies as an easy baby.
• Jacks no longer cares for acceptable toys.  He likes playing with hand controls, phones, legos, crayons, purses, magazine stacks, paper, and puzzles.  He likes having a bucket of stuff to dig through if his attention span lasts.  More often than not he sees something he wants/likes/needs and is off to explore that.
• Jacks also no longer cares for kix or cheerios...he knows there are bigger things out there to enjoy.  He likes his sippy well enough, and still nurses every 3 hours during the day.
• Jacks loves parks, and I wish we could go more often right now.  He loves to swing, and is starting to explore sand.  He loves slides with someone, though without still scares him.  He likes crawling through tunnels, if they exist at the playground we are at.

I think that's it for now!  Jacks cracks me up all the time, and I love his exuberant spirit that seems to permeate every day of his life.  Apparently I didn't take a ton of photos with the craziness that has been this month, but here's a few.

 Playing with cousin Brielle-pens, crayons, and markers.  Classic.

 I can't tell you how many times this happens. Getting into Sara's art/afterschool bucket.

Visiting the Speech Pathologist

James and I visited his speech pathologist today to follow up on his liquid diet.  During and after surgery, the muscles in James' throat were bruised due to the breathing tube and NG tubes being inserted in his throat for so long.  Those muscles are now somewhat weak, which makes it hard for liquids to go down the right tube when James drinks.  The esophagus (food and liquids) is behind the trachea (breathing), and when we eat/drink, whatever we ingest has to move over the trachea and back to the esophagus.  If food/liquids accidentally get in the trachea, we cough/choke/gag.  In short, with James' muscles being sore, liquid in particular is slipping into his trachea, which could result in fluid in his lungs, and potentially, pneumonia. This is why his liquids must be thickened right now-having them thicker gives his muscles a little more help in terms of moving the liquid to the esophagus instead of his trachea.  There are three levels of thickener: nectar, honey, and pudding.  James started on the nectar in the hospital, but was still aspirating liquids, so they upped him to honey consistency, which is where he is currently at and doing well.

James' speech pathologist (who knew they covered this in addition to speech development?!?) suggested we do a 2 month weaning program to get him off of thickener all together. She is keeping him at the honey thickness, as he still coughs a bit while drinking liquids-I'm glad she heard that while observing him drinking, as this has been worrying me.  The weaning has to be a gradual process in order to strengthen his throat muscles over time.  He'll stay on the honey consistency for the next week and a half and then I'll start decreasing the amount of thickener in the liquids; we'll go in for a check up so the pathologist can watch/listen and see if the decrease is okay.  We have a lot of other guidelines to follow, and it was extremely helpful to learn why this happened, as we didn't really think to question this while in the hospital.  Our insurance unfortunately does not cover the thickening gel packs, so we'll have to pay for that out of pocket.  However, it does cover unlimited speech therapy sessions, which apparently is not a common occurrence-for that, we are very thankful!

We have James' pediatric and surgical follow-ups this week as well, and then his cardiology follow up in two weeks.  I can tell he is ready to be done with doctors for a while, but continues to acquiesce to all these check ups.  He's a trooper!

Jackson: 10 months

In all actuality, Jackson is 10 and a half months by now, but I neglected to do his 10 month update, so I'll do that now, and then not have a ton of new stuff to write about when his 11 month update rolls around.  

• The big deal during Jackson's 9th month was finally starting to crawl everything at lightning speed. That started right after he turned 9 months, and he just never slowed down thereafter.  As always, crawling brought Jackson a huge sense of independence, and you can tell he loves being able to move more than bottom-scooting ever allowed him!
• Greater mobility has introduced Jackson to lots of new favorites: closing doors and shutting himself in a room by himself; crawling into the bathroom and playing with toilet paper; playing with lots of new toys in the toy room; zipping over to the magazine stacks and ripping those apart; locating any lone kik on the floor and eating it (this applies to legos as well), and trying to crawl out the front door if left open.  He loves to find people in their bedrooms and just smiles his ears off when he finds me.  
• Jackson also became very adept at pulling up this month and especially loves to do so to peer into the bathtub.  He is often standing in his pack and play in the morning, which acts as Karianna's alarm clock.  He will take steps if someone is holding his hands, and will cruise  little bit across the couches, but not a ton yet.  
• Jackson loves puree pouches of any sort-he is not picky.  He loves vienna sausages, bananas, applesauce, eggs, and really, any foods cut up into bite size pieces.  I am using up all my baby food jars and am done buying them-and the purees will only be for travel, honestly.  He loves to eat like big people and gets sad if you don't give him the big pieces. 
• Jackson has been a magnet for mosquitoes this month, so I have been limiting his time outside unless he is covered with bug spray.  I am super excited to take him to the park more often as the weather starts cooling down-he loves swings and I think will be super excited to start sliding and crawling around in the sand.  His last swim was such a blast, he LOVES splashing, it is so funny to see!  He does the same thing in the bath, and scares me with how often he pulls himself up to the side of the tub while bathing.  He still loves splash pads, and I take him to those as often as possible.
• Just a few randoms:  Jackson still takes his binky though he forgets about it during the day.  He sleeps less and less in his swing for naps, and I'll probably pack that up this month. He waves hi and bye, will clap when asked, and will squint his eyes when someone points a camera at him.  He loves kix and cheerios, and had his first packet of fishies this month as well as graham crackers.  He will give high fives an will kick when asked.  He tends to grab himself when his diaper is being changed, but what boy doesn't?  He loves his siblings, and I love to hear his giggles when they play with him!  He just laughed his head off while Karianna did the ice bucket challenge on him-only no ice water, just a ton of rainbow loom bracelets!  

Overall, Jackson remains a pure joy to have in our home, such an easy baby, and I am so impressed with his flexibility these past few weeks as he was away from me for long stretches of time.  He still nurses every 3 hours thankfully, and sleeps so well at night-super grateful for that one!  We love you Jackson!  

In need of some updates!

I have massively fallen behind on the blog!  I have so many pictures and posts to put up, and it has just fallen to the wayside in the craziness of the last month.  Nonetheless, I have a goal of getting all those missing posts up this week, most importantly, Karianna's birthday and James' surgery.  Hopefully I can get on top of this before the holidays begin!

Wishbone

We finally finished off the last of our rotisserie chicken tonight, and Sara and Karianna got to pull the wishbone. That sucker took forever to break!  Once it finally did, Sara ended up with the big section, thus her wish is SUPPOSED to come true.  She wished that everyone else would do all the dishes.  Of all the wishes to make, that's the one she goes with!!!!  We all had a good laugh about that one.  I'll let you, dear reader, guess who will end up bringing that wish to fruition...