James' Heart Surgery: Day 2

Today was a big day for James-I expected it to be a lot of rest, but that's not what his medical team expected apparently!  This is so different compared to when James was a baby.  In order to recover, toddler James needs to be up and moving, whereas baby James just needed to rest and eventually eat.  It was exhausting for Jared and I, I can't imagine how James must have felt.

The night went well, and I must have been so tired, I actually fell aspleep for a 4 hour block before being awakened by our new day nurse, Kristi.  She informed me they were preparing to take out his breathing tube, so I popped out of bed to help James.  Apparently they had weaned him down from full oxygen, to breathing room temp and even going above the machine, hence the decision to remove the tube.  They suctioned out his lungs quite a bit beforehand, and then pulled it out-obviously not comfortable, but James seemed so much calmer after.  He has several moments during the night when he would just lay there with his mouth open trying to cry, and he would not close it, even when it seemed he had fallen back into sedation.  They kept wiping the inside of his mouth down with a wet sponge, and I think that was more soothing than morphine for James.  Anyhow, once the tube was out, you literally could see his body relax again to some degree, and he was doing well breathing on his own.

They started James on lasix today to help with swelling in his thoracic region, and that tends to mess up electrolytes, so they also gave him infusions of calcium and potassium.  He weaned off of two of his blood pressure meds with goals of moving off of two more through the day.  He was started on Torodol for pain management, as he seemed agitated and uncomfortable.  He continues to wake every 45 minutes and has tried on several occasions to sit up, roll over, or curl his legs up. His nurse did put restraints on his wrists to make sure he doesn't subconsciously try to pull any of the tubes out.  I am doing my best to calm him with each episode; it is a difficult process.

James' nurse doesn't want him resting  ton today apparently.  I do not particularly care for her, everything seems like a checklist item that he just needs to check off to go home.  While I want him to go home, I want him to be pain-free and to feel safe, and I don't feel he has been either one today, especially in certain spurts.  As an example, Kristi gave James a good shot of morphine at 1pm and didn't give him another until the shift change at 7:30pm....our night nurse was very surprised.  Kristi said to me at one point, James just had heart surgery-he's going to hurt and be uncomfortable here either way, its better to get him home.  While I agree with the home part, I am not sure why you compromise pain management to make that plausible.  I made it very clear to the night nurse we wanted James pain-free, and that sentiment was then clearly portrayed to the folks on rounds that evening.  I liked that night nurse a lot after a bit of a difficult day not truly connecting with our day nurse.  

Finishing up the thought process that started the preceding paragraph, James actually got out of bed today and sat in his chair. He tried taking a drink of water but started aspirating it into his lungs a bit, so they restricted him to ice chips, which he loved, loved, loved!  He held the cup on his own and kept grabbing handfuls and just shoving them in his mouth.  I went home to rest with Jackson during naptime, and while I was gone, Jared helped the nurses and physical therapist get James up and on a walk up and down the hall. Jared says James hated it, saying "no" the entire time, and eventually "want to go home"; however, the simple fact that he was walking well was very good news, and walking is essential to strengthening the lungs post surgery. He fell asleep right after his walk, he was so tired. On a similar note, the fact that James is talking (albeit softer and raspier), it is a huge blessing to hear him talking, as that means his vocal nerves didn't get damaged during surgery.  His upper register when he cries is specifically softer, but its nice to know James hasn't lost his ability to speak.

Since James is aspirating liquids, they have a respiratory therapist coming in every 3 hours to do pap treatments, basically pure oxygen being forced into his lungs through a breathing mask.  Its painless, but James does not yet like the feeling of having mask over his fact, and really flips out for the first few minutes until he finally calms down.  He is allowed to drink liquids, but only if they are thickened with this gel stuff.  They also tried some oral meds tonight (the lasix is oral) as that will be necessary before he can have his IVs removed.  He drank it down okay, but he threw up about 20 minutes later, which was sad, and you could tell it hurt his chest a bit.  We will wait to push oral meds a little more in case he is still nautious from surgery.

Overall, James was quite despondant today.  He was moaning a lot and saying no to everything.  He would jerk awake from naps within 30-45 minutes, and he started pulling his hair today, which to me says he was feeling pain.  I am hopeful that with a more proactive and understanding nurse tonight he will get some rest and pain-free moments.  He is such a fighter.  I'll be staying the night again so Jared can go home with the kids and get them to school tomorrow morning before heading to the hospital.  

 Hugging the little wolfie he got from his nurse yesterday-and of course, heart dog and his "hospital blankie", as he calls it, are now mainstays in his bed.

 He loves those ice chips, but he is not happy in general-and still kind of loopy from being on the sedative (Dex).

 After the walk!

 Later on that evening after a strong dose of morphine-he finally seems comfortable.

James' Heart Surgery: Day 1

**The next several posts may be poorly organized and articulated, since they include my thoughts throughout James' hospital stay that I just jotted down very quickly.

Today was surgery day for James.  It was both harder than I thought, yet more manageable than I thought ("easier" is not an appropriate descriptor for this situation).  I'll post the basic surgical timeline below, as that might be an easier way to describe the day:

• 6:00 am:  We arrived at PCH, having left our house around 5:20am.  James hadn't eaten yet, and really wanted to drink our water bottles.  We had quite the wait down in admitting, which is never good for a fasting 2 year old, but we made it work.  They whisked us  up to the 4th floor around 7:15, and from there things moved quickly.
• 7:35 am: We had visits from the anesthesiologist and Dr. Nigro's PA after changing James into hospital jammies.  They quickly gave him an oral dose of Versed, and he started drooping very shortly thereafter.  I am very grateful they do that, as I don't want him to feel any pain or remember anything.  He and I rested in his bed playing on the tablet for those precious 25 minutes before they came to take him away.
• 8:00 pm:  Right on the button, they came and took him to surgery.  I picked James up and cradled him in my arms for an extremely short walk down the hall to "the point of no return".  I remember it differently from the past, and I wasn't expecting to reach that point so quickly.  I started tearing up right away but really tried to hold it together so James wouldn't be scared. He was hugging his heart dog so tightly, and the PA said he could take him to surgery with James. Jared and I gave him kisses and hugs, whispered how much we loved him, and with that, the PA scooped him out of my arms and started down the hall, reassuring us he would take good care of him.  It would have been manageable if that's how the separation went. However, as the PA started walking away, James started crying, and calling out for me.  My heart broke.  I did not want his last experience before surgery to be Jared and I leaving him-fear, sadness, confusion.  I broke down and Jared had to physically steer me back into the room.  I just kept telling Jared I didn't want James to be sad.  I couldn't stop crying.  At some point, the PA came back to tell us James was asleep within 2 minutes of leaving us-apparently they had his bed and anesthesiologist waiting to put him to sleep with the mask.  To be honest, I don't know if that time frame was fully correct.  I chose to believe it though because the only other option-knowing James was scared and alone-made me panic.  We ran down to grab a quick breakfast from the cafeteria since neither one of us had eaten before we left, and then we headed to the 5th floor waiting room (CVICU) to start our long day.
• 10:00 am:  We received word that surgery officially started just before 10.  At this point, the nurse took us to James' actual recover room in the CVICU-5124.  That was a huge blessing as it was quiet, Jackson could take a nap/crawl around on the large blanket I had brought, and I could stretch out on the couch/bed and rest, as both Jared and I only got about 2 hours of sleep the night before.  Jackson fell asleep for about an hour in his car seat before playing on the floor in our makeshift play area.

• 11:15 am:  Our nurse, MaryRose, came to tell us he was officially on bypass.  The PA also came back in to tell us there was a lot of scar tissue they had to work through before they could get him on the bypass machine.  We still didn't know if valve replacement would be necessary at this point.  James apparently was doing great under anesthesia, and so far, everything was going well overall.  At this point, Jackson was starting to have a hard time, so Jared decided to take him home around 1:00 to lay him down for a nap, and then head back to the hospital when my mom got there to take over with the kids.  We assumed we had quite a while left, and I was feeling fairly comfortable, emotionally speaking.
• 1:45pm: Coming as quite the surprise, we got news he was off bypass and they were starting to close him up!  The PA confirmed they dd not do the Ross procedure for valve replacement, but didn't share many other details as he wanted to let Dr. Nigro explain the thinking behind that choice.  He said James had come off the bypass machine very well-they have to drop the core body temperature while on bypass, and he said when they had "hooked his heart back up" and were raising his temp, James' heart started beating again before normal temps were reached; it was as if it was just ready and rarin' to get back to work!  That made me feel good when the PA phrased it like that, since that part of the surgery really worried me. They asked me to clear out of the room a short time later so it would be empty when they got there for recovery.  They always like to set up everything before parents are allowed back in, which makes sense.  I ran down to grab a sandwich, wolfed it down, and headed back up to the 5th floor.  I called Jared and told him to get back as soon as possible, though we decided to have him leave the baby at home, and I could just pump.  I felt very calm through this whole situation, and felt confident everything had gone well.  Inwardly,  was already saying prayers of gratitude.
• 2:45pm:  James was brought to his room on the 5th floor while I continued waiting.  It took them a while to invite me in because James' blood pressure was quite high-140's/150's, and they want it under 90.  It took them some time to adjust his meds and normalize those numbers before inviting anyone into his recovery room.
• 3:40: I was allowed in the room!  Jared was about 15 minutes away at this point.  I rushed in to see him, and he looked great-as great as can be expected anyway.  He was hooked up to the ventilator, which I knew to expect, so it didn't come as a shock.  He had multiple meds (blood pressure, pain meds, sedatives) connected by IVs in his foot, arm, and neck, and two chest tubes that were draining fluid from his heart and lungs.  He had pacers hooked up and ready to go, as well as a catheter and rectal probe monitoring temperature.  They had a bag of blood ready to use just in case his chest tubes drained too much blood (he did get a transfusion during surgery).  His incision was bandaged very well so it really didn't look scary.  His color was really good, and he wasn't swollen at all.  He was obviously sedated still, though his eyes were not closed all the way, and he was twitching his arms, legs, neck, and occasionally his upper body.  His white blonde hair made me smile-super curly and completely un-altered by all the medical items that otherwise covered his body.  I asked a lot of questions to make sure I understood what all the numbers/tubes meant, and settled in to wait for Jared, who arrived just about 10 minutes after I was allowed in.

That's it for the timeline, though I'll add a few more details that popped up through the rest of the day.  

The main goal for that afternoon/evening was finding a balance between pain meds and blood pressure meds.  James started fighting through the sedation and waking up maybe an hour after being brought into his room.  Those were sad moments, as he would look at us with a few moments of lucidity before being pulled back down into sedation.  We talked to him as best as we could to reassure him everything was okay, but he would start to cry as his nurse would adjust his pain meds.  He couldn't actually cry because of the breathing tube, or talk for that matter, so it was just him opening his mouth really wide, screwing up his eyes, and breathing heavily, with little tears running down his cheeks. I wish I could wipe those images from my memory.  They assure me he won't remember any of this, but its hard to be sure in the moment.  I don't feel like he had any moments today where he was full resting-though his pain meds were adequate, he kept fighting through sedation, and it was difficult to know when he needed to see me because I couldn't hear him cry-often, I would only know because his oxygen monitor would start beeping, indicating he wasn't getting enough oxygen because he was crying.  I pretty much parked myself right next to his bed to alleviate his confusion in those few, lucid moments as often as possible.  

Dr. Nigro came in and explain the particulars of the surgical fixes they ended up doing.  They repaired the ascending aorta as planned, and upon looking at the valve, didn't feel the Ross was necessary.  They ended up making incisions to wide the two cuspids of the aortic valve, and were pleased to report no leaking whatsoever. Dr. Nigro is confident this type of a fix, in conjunction with the normalized aorta, will last James several more years before we have to delve into valve replacement.  He did express some concern that the narrowing of the aorta had happened again-it really was deemed the same problem as when James was a baby, termed a coarctation of the aorta.  It is not common for this to happen, thus he biopsied some of the heart tissue and sent it to pathology to see if there was some kind of degenerative tissue situation going on.  We'll have to follow up on that later, and as of now, we aren't concerning ourselves with things out of our control.

Jared headed home around 9:30pm to take over with the kids for the night.  James was in full recovery mode, and I felt confident I could make it through the night with him. It was such a full, emotionally-charged day, and yet we ended it feeling so grateful that things went well with the surgery. 

How Do You Prepare?

Its hard to know how to treat the day before surgery.  At this point, we are about 98% sure it is happening tomorrow morning, bright and early.  There are things that still need to be cleaned, and I am sure it will be a late night for Jared and I.  But we couldn't end this day without several solid hours of family time.  So around 4pm, I abandoned my drive to clean, and just focused on the kids, especially James.  We headed to the Gilbert temple together to walk around.  We were somewhat sad that the gates were locked, but we still walked around the outside of the temple for quite a while and felt a sweet spirit.

 We made dinner together back at home and spent some quiet family time reading James' favorite books and singing his favorite songs.  The Lautenschlagers came over and gave multiple blessings to James, me, and 3 of the kids.  James was in my lap for the last one, and near the end, he stood up on my knees and put his hands on my head along with Jared and Greg.  While possibly innapropriate, I didn't stop him-I thought it was so sweet. We didn't end up getting the kids in bed until 9:00pm after one last snack for James, given that he can't eat after midnight.  The kids all gave him sweet hugs and told him they love him.  We have worked hard to keep things mostly positive for the kids, as I don't want them to worry about him unnecessarily.....it was an emotional thing for me, though, to see their heart-felt wishes for him.

I'm trying not to linger on tomorrow, and I won't do so here either, but those last few moments of tucking James in bed and whispering extra prayers with him in my arms were almost too much for me.  We so love James and are completely reliant on the Lord to watch over him and our family tomorrow.

Peter Piper Pizza

We hit up Peter Piper Pizza today despite the torrential downpour of rain and the resultant pooling of water in the parking lot.  We wanted to do something James would enjoy before surgery Monday, and this was a great pick!  The kids loved the pizza, and even Jared and I enjoyed the cheese-stuffed crust.  The games were the highlight though, and it was super fun for me to walk Sara and James around playing the different games that would garner the most tickets.  Everyone ended up with prizes, and I pooled enough tickets together to buy what we now call "mommy bracelets" for the kids that would deign to wear them.  They are actually friendship bracelets, but James and Sara really responded to the term "mommy bracelets", and so that's what we shall call them from here on out!

*As an update, James wore his mommy bracelet to the hospital and they let him wear it through surgery.  I don't know if it really helped connect him to me, but I like to think it did!  

Here's a lovely picture reel of pizza fun!

Screeching for food!

 Love the joy-nothing better!

 Even at 10, she had a great time!

 Please ignore the closed sign...we realize he probably shouldn't have been in there, but no one was cleaning it or anything, so we ignored it in lieu of having fun.  I know-we are rebels.

 Wouldn't even look up to smile!

 Girls are a bit different, apparently!

 LOL, Sara is awesome!

Neither boy is really playing this game, but they sure did enjoy pretending with the demo!

Pre-Op Testing

We went to PCH today for James' pre-op testing.  Essentially, they took a blood sample so they could have blood on hand for transfusions during surgery. They also did a chest Xray and an EKG.  James was a fantastic patient for everything except the bloodwork-and even for that, he did okay.  They numbed his arm a little and Child Life brought him an iPad to play.  Regardless, he still started crying when they inserted the needle, and it felt like a sad precursor for what will come next week. Nonetheless, he did a great job calming down, ate his lunch like a champ, and enjoyed the big "camera" that took his chest xray.   Some pictures to follow....

The Day the Cactus Fell

We certainly were not expecting to wake up this morning to see this:

Yes, that is our 30 foot Saguaro cactus in pieces upon falling to the ground overnight.  I woke up to feed Jackson this morning just after 5, and after putting him back to bed, I thought I heard a bang of some sort.  I listened from the comfort of my bed for a minute, thinking it was one of the kids kicking the wall by accident.  I heard nothing else, and thus went back to sleep.

Fast forward to 6:30am when the door bell rang. That's kind of an odd occurence, and both Jared and I jumped out of bed to the front door.  I peeked through the blinds and saw two older teen boys at the door.  I didn't know who they were, and given that I was still in jammies with my hair thrown up in a bun, I opted not to answer it.  As I watched them walk away, I noticed a huge clump of dirt out of the corner of my eye.  Upon focusing, I realized there were roots coming out of that dirt mound, and the cactus was no longer where it was supposed to be.

Yikes.

Jared and I rushed outside, and sure enough, the cactus had fallen-all 30 feet of it, plus 5-6 long arms.  We tentatively crept down the sidewalk, and I was shocked how syrupy the sidewalk was.  That cactus was soaked with liquid-sticky liquid that was streaming down the street.  The cactus was just in pieces all over our yard, the neighbors yard, the sidewalk, the street--it was terrible. Pictures do not do it justice.  To see this in real life is just a sight you will never see again.  We were shocked.

Jared and I spent half an hour moving the pieced in the street back to our yard.  A 3 piece section of one of the arms was so heavy, I couldn't budge it a single inch with a shovel.  After researching a bit, we estimated the cactus to weigh around 2 tons.  We brought the kids out to see the disastrous site-they were utterly impressed. A few neighbors came over to chat about it, and we learned it probably fell around 5:30 given their accounts-this matches up with the sound I heard after feeding the baby this morning. I stated calling around real quick for clean up quotes, and we think we will be able to get it cleaned up for 300-350; crossing our fingers.  For now, it will be our new eyesore that will certainly amaze any passers-by.



Just so crazy!  We had noticed the cactus was leaning more than normal just the day before, but I certainly did not expect for it to fall overnight!  Just....wow!

Bath Fun!