All Together at the Temple

One of James' post-surgery goals is to go on a walk everyday.  It helps his lungs recover from being on the bypass machine, and of course keeps his blood pumping.  Today, we headed to the temple to walk around given the weather is so much nicer.  We didn't stay too long, but it was nice wandering around and taking a few nice pictures.  Jared and I both realized how vigilant we need to be to make sure James doesn't fall.  James watches JD and Jordan running and climbing, and he wants to do the same thing....its difficult to reign everyone in, to the point where James is not tempted to do those things.  Its a work in progress for sure!  I do love that James is completely attached to his Beads of Courage necklaces-he loves wearing them!

Decorating Pumpkins

I finally got the rest of our indoor Halloween decor up-half of it was up before surgery, and the other half went up today, which mostly consisted of the lights and garland.  The kids were so excited, since Jared had taken them to Peter Piper Pizza while I decorated-I loved their reactions when they walked in the house and saw it all "spookified"!  

To top off the Halloween preparations, we made our pumpkins tonight as a mini FHE after visiting the temple.  I love seeing the kids' creativity during this project!  Karianna seems to be growing out of it, but she still made some great faces on hers.  James seemed super excited to make his, and Jackson kept crawling around eating all the pieces.  

Below are all the pics Jared took of the during-, and after-products.

Costume Preview

JD and Jordan are being Ninjas this year, and I FINALLY found the perfect outfit for Karianna, who has been really struggling to come up with a costume:  Athena.  She loves greek mythology, so when I saw that costume, I had to grab it for her.  The picture below does not do it justice, but she is going to be beautiful!  Though not pictured, Sara is going to be Anna, and James will be a Dog, though he will stay home with me to pass out candy.  Jackson will likely be a raccoon, which was James' costume from a few years ago.  He'll be stinkin' cute!

James' Heart Surgery: Day 5

We are home!

I couldn't resist the picture of James with his Beads of Courage, his heart dog, and his sword-each item the epitomy of this past week in terms of overcoming trials with hope, courage, and strength.  This little boy is such a rock star!

I called Jared for updates this morning, just trying to see when I should come back to the hospital depending on when they might release James.  Jared mentioned James' blood pressure was up a bit, and he was just waiting for rounds to see what the doctors thought in terms of a timeline.  James had taken his meds very well all night to the degree that they had removed his NG tube around 11, which I was super pleased to hear-it was just his blood pressure that would be the deciding factor.  Around 10:45am, Jared called back to say the doctors were discharging James, hopefully by 1:30 or so.  Jackson and I jumped in the car to head to the hospital.  Jared hadn't eaten breakfast, so he ran down to the cafeteria once we arrived. During that time, I ordered James lunch, played with him for a while, took a walk, and fed him ice cream that was waiting in the freezer overnight for him.  He ate half of it, and then fell asleep on the bed-about 5 minutes before lunch arrived!  I figured it would be good for him to nap before heading home, so I let him sleep while I cleaned and packed the room up.  Olga came in around 1:00pm and we woke James up to give him his last round of meds and to change his dressings.  This was the first time I saw his incision.  I knew what to expect, so I think that prepared me, but it still overwhelmed me to consider what having an incision like that means.  It looks very flat on his chest, which is great because his chest was kind of concave after his first surgery-I hope it heals like that!  The only bad part if the physician who took out his chest tubes did not put a stitch in them.  Thus, those two spots look like gaping holes, which I am not too happy about....I'm trying to remind myself, if that's the worst I have to complain about, we are doing pretty good.  We cleaned the incision well, and got James dressed to head home.

After going through all the discharge information with Olga, we got the prescriptions filled at the pharmacy, grabbed a ton of thickening packets to take home, and took one last walk around the halls.  James was so excited to be in regular clothes, he kept trying to push the stroller to the elevators in an attempt to leave.  We said good bye to Olga, the nurses/doctors in the hall, and of course, to the 5th floor pig that we always remember as a symbol of the entire experience.  With that, we strolled out of the hospital around 2:30, so very grateful to have James with us as his very normal self.

The kids are so happy to see James and are doing a great job minding his incision and not hugging him too much.  Several extended family members came over to see James, who proudly wore his Beads of Courage necklaces and readily lifted his shirt to show off his incision.  I'll have him sleep in my room tonight on a camping cot, just to make sure he is okay.  He ate a full bowl of chex for dinner, and downed meds in OJ with very few problems once we made it clear it was either that or a syringe full of medicine.  Right now, giving him that choice is necessary, and I have no problem keeping up with that three times a day if it means he is taking his meds.  He doesn't seem to be in much pain at all, and is just acting like he hasn't even been gone for a week.

We are so very blessed. Words could never express how blessed we are to not only have James back with us, but to have HIM here, and not just a shell of James.  We were super worried that his mentality or emotional stability would be altered after surgery and a traumatic hospital stay---that just isn't the case and we feel so very, very blessed for that fact.  We love the Lord and fully recognize his hand in everything.  Our ward family and extended families have been instrumental in supporting us through this journey, and we feel doubly humbled because of this service.

All in all, we are blessed...its difficult to end this mini series with any thought other than that.

 One last visit to the playroom.

 I bought these three "scaries" for James from the gift shop since he found so much joy from the Halloween stickers down the hall-he loved them!

 One last cat nap, laying horizontally in the bed....interestingly, it doesn't seem to bother his incision to sleep like this, and he even occasionally rolls to his stomach.  The doctors/nurses tell us James will quickly gain a personal awareness about what is okay and not okay to do with his incision--this must be one of those things.

 Just woken up and the first time we took off his dressings.  More bruising than I anticipated, but otherwise, it looked okay.  Those two circular marks below his incision and then off to the left are the chest tube spots.

 All dressed and ready to head out!

 Oh, the joy!

 And the pig!

 Arriving home to a banner from the Lautenschlagers that says, "Welcome home James!!!!"

 Now the proud owner of 2 Beads of Courage Necklaces.  So proud of this little guy!

James' Heart Surgery: Day 4

A breath of fresh air:  James is back!  

What an enormous difference a single day makes!!!!  Jared called me early this morning to tell me that James was smiling, laughing, talking, and honestly-being normal.  I couldn't believe it. Yesterday was so hard, and I was so depressed the entire night-hearing that such  major change occurred overnight seemed so impossible.  I rushed getting ready and headed to the hospital only to find out Jared was right:  James was back!

He has his NG tube in of course, but it doesn't seem like he cares-he's not trying to touch it or anything, and if you ask him about it, he very carefully reaches up, taps it gently, and then leaves it alone.  He apparently threw up again last night when the overnight nurse tried oral meds again, and ended up expelling the entire tube.  Jared said having it placed again really wasn't too traumatic on him after the throwing up instance, thankfully, and even despite that, he woke up happy this morning and seeming like his usual self.  He ate a full serving of eggs for breakfast, though nothing to drink.  When I got there, he immediately wanted to play with his car toy he earned from the Child life ladies, feed Jackson fishies, put stickers on his coloring book, and sit in the couch-not his bed-and play with the tablet.  He was talking up a storm, asking to go on walks, even trying to run around the room and climb his bed.  I just could not believe the difference!

True to the charge nurse's word, we had Olga today as our day nurse.  Olga took care of James when he was here for his first open heart surgery, and she remembered him well-isn't that something!  She has a great way with kids and it was such a breath of fresh air after the last two days.  James reacts well to her, and we obviously have an established rapport with her....I can't help but think James' huge turnaround has something to do with a much more positive tone in his room, despite some setbacks that occurred last night.    James had his last breathing treatment right before sunrise today, and doesn't need those anymore.  He's really just taking 3 meds through his NG tube (and hopefully orally), and working on staying active.  The OT and PT ladies came around before I got there and deemed James perfectly fine to avoid any OT or PT therapy post release.  They had some nice things to say about me and my manner of getting James to comply with their activities the day before-that felt nice, like I was doing something right.

Jared did take off with Jackson shortly after I got there, and I proceeded to mend my relationship with James-thankfully, he didn't seem to hold any grudges, and we got in lots of good walks, books reading, tablet playtime, and car fun.  Olga told me he was due for more meds, and she was curious if I had any ideas of how to get him to take it orally. She suggested mixing it with applesauce, so we tried that with absolutely no success.  He took one bite, immediately screwed up his face, and utterly refused it thereafter.  After yesterday, I was not in the mood to hold him down and force it, so Olga administered meds through the NG tube, and assured me we would keep trying other ways.  I was a little down after that, as this is the only thing keeping him at the hospital at this point.   Olga suggested we try a chewable motrin tablet in lieu of an oral dose...that wouldn't solve the lasix problem, but I was open to trying it.

I did manage to get him to drink all of his orange juice (thickened) that he skipped from breakfast.  It was that simple feat that made me realize maybe we should try mixing his meds into OJ, which is highly concentrated and would cover up the taste. Come lunch time, we went on a walk while Olga mixed the concoction in his room.  She had it ready with his lunch tray, and I was very nonchalant about it-just put it down and told him to drink his juice.  He ate a bunch of fries and a piece of pizza, and intermittently drank his OJ.  Its funny, after the first sip, he made a face, and he said, "Its gross".  But apparently, not so much that it stopped him from drinking it, and within 5 minutes, it was all gone and he was asking for more. SUCCESS!!!!!!!!  Oh, it was such a relief to have found the answer!  I eagerly reported this milestone to Olga, in addition to another discovery-James pooped.  Doesn't sound like a big deal, but having a bowel movement can be tricky for a kid whose ribcage hurts while pushing.....that meant he wouldn't needed liquid colace, another victory.

So from that moment, we just kept climbing uphill.  James and I stayed busy all afternoon playing, and when Jared got there, I helped him get the OJ set up with dinner, and made sure James drank it before leaving-he did great.  Olga told us before heading out that as long as oral meds continued to go well overnight, we would likely be leaving tomorrow.  We feel so grateful she was our nurse today and told her we really hoped she would be with us tomorrow as well.

The best moment for me came when I was leaving for the night, as Jared had offered to stay overnight again.  I hugged and kissed James as normal, and as I was heading to the door, I heard his little voice call out, "I love you mommy!"  My heart melted.  The entire day had gone well, and I felt our relationship was repaired from the damage the previous day had caused.  But those little words just sealed it for me.  I love this little boy to pieces, he is just my sunshine when all else seems grey.  I am excited for tomorrow, excited at the prospect of taking this little guy home.

Playing with his sticker book.

This is James' favorite stop on our 5th floor walk!  He loves these picture decals this little girl in this neighboring room put up-we literally visited this room 5 or 6 times today.  If James got into a funk, all I had to do was ask him to go on a walk and visit the "scaries" with me. Pure gold.

James' Heart Surgery: Day 3

Today has by far been the most difficult day, so much so that Jared offered to stay the night tonight so I could manage my emotions.  James is fine, but the day has not been.  I sent most of this as an email to family, and will just add a few things to it.

James had an extremely busy day today.  He had his chest tubes taken out this morning, which is painful, but he did okay with it.  He also had his pacers taken out (those can hook up to a pacemaker if his heart went into weird rhythms, but we are past that danger).  They took IVs out of his hand, foot, and removed his central line in his neck, which was odd to me since he hasn't yet proven he can take oral meds.  He is not hooked up to any IVs any longer, which means no more meds that way.  He is getting breathing treatments every 3 hours because there is still "junk" in his right lung, and he has a nose canula that he uses every now and then for oxygen, especially when he gets riled up.  The respiratory therapist says his lungs started looking better after the chest tubes came out since it hurts less for him to cough now.  He ate some fruit loops and a bit of a pancake for breakfast (yea-his first food since Sunday!), and a whole banana for lunch.  At each meal, it has been a real struggle to get him to eat even that; same for drinking.  He can only have thickened liquids since he is aspirating straight liquids.  The respiratory therapist, occupational therapist, physical therapist, and speech pathologist all came to see him today.  He has had two chest xrays and an echocardiogram.  He took two walks so far today around the floor and went to the playroom.  I think the only thing he has not done is take a really long, uninterrupted nap, but they want him moving and doing things to keep his heart and lungs up to par.  He is by far more awake today as they have weaned him off of the Dex (sedation) and the rest of his blood pressure meds.  At this point, he is only hooked up by his blood pressure cuff, pulse ox wires, and temp reading on his back-and even those are taken off when he gets out of bed.  

Once they took out all his IVs, they started to try giving him his pain med, and lasix (controls swelling/liquid retention) orally again.  This was a massive fail and a huge part of the reason today was so discouraging.  James absolutely panicked upon tasting the meds and his SATs dropped into the 70s (meaning he wasn't getting enough oxygen because he was crying so much).  He spit all the medicine up.  In one instance, he got it down, but threw it up a few minutes later again.  Since they didn't know how much he got down, they couldn't readminister the dosage; thankfully, he was so wiped out, he fell asleep.  The next time they needed to give him his meds, they tried thickening it with the gel he uses in liquids, and they flavored it with cherry syrup.  He flipped out the moment he saw the syringe.  That half an hour of trying to get him to swallow it was terrible.  I couldn't leave him alone, yet I now feel like he is looking at me like I'm the enemy for helping.  He swallowed some of it, but not enough to really make a difference.  He is pulling his hair more and more, and moaning pretty consistently, which to me is an obvious sign of pain. 

 I bluntly voiced my concerns about oral pain meds to Kristi, the same nurse he had yesterday that I didn't feel he or I was connecting with....I honestly am very frustrated she proceeded to pull all his IVs when he wasn't able to take oral meds because now, they either try and start a new IV in veins that are already overused, or they put an NG tube in his nose to administer meds. When he woke up from his nap around 4:30ish, he wouldn't eat or drink anything to the point where he was hitting and kicking me away from him, just saying "no" over and over.  He is so tired, and in pain.  I again brought these things up to our nurse, and after conferring with the physicians, they decided to put an NG tube down his nose.  They can give him meds this way, as well as liquids to help him build up his strength.  We are still pushing food orally, but I am hopeful this will give him some comfort, since that obviously hasn't been happening today.  It was terrible getting the NG tube in-quick, but terrible, as it seemed to traumatize James to some degree.  I really hope this will be worth it.  I feel as if our nurse was "disappointed" in James that he wasn't eating and drinking-she was acting frustrated that they "had" to place an NG tube and I had to press her for options other than oral meds that were causing more trauma than the actual pain.  It was all I could do to not cry, and to keep being vocal about other options....I just couldn't understand this nurse's attitude.  Does she expect a 2 year old, 3 days post-op heart surgery, can understand the reasoning behind taking an oral med????  She is completely devoid of positivity about this, and in his small way, I think it has really affected James, which makes me utterly sad.  She did ask child life to make him a sticker chart and brought in a few toys that he could earn for meeting some of these medical milestones....she brought it in and never mentioned it again (though I have been referring to it to see if he will respond to it).  I don't feel this nurse is at all invested in James.  I feel as if he truly is just a patient that is annoying her.  

I had a hard time trying to deal with all this emotionally and physically since I haven't gotten much sleep.  I don't like confrontation, but it seemed necessary from the standpoint of advocating for James.  When Jared got to the hospital for the night around 7, I told him between many tears what was happening and my feelings.  We waited until the new nurse came in and we told him very objectively that we needed to speak to the charge/head nurse about some of our concerns from the day.  She was so kind.  She listened patiently as we shared our basic concerns about our day nurse, and immediately called the charge nurse.  That nurse also listened attentively and profusely thanked us for voicing my concerns, as they want to make sure James has the best care possible.  We made it clear we don't want to see any trouble come to that nurse, but we also emphatically stated we didn't want her on James' case for the remainder of his stay at PCH.  She assured us she would rearrange the schedule and gave us her card should we have any more concerns.  Our nurse (names Mary) and the RT who was there at the time were so understanding after the charge nurse left-they brightened up the room so much as they helped get James pain meds via NG, and his breathing treatment.  It was really, truly only then that I felt the huge disparity between a positive, encouraging nurse, and one who just plainly is not.  We sincerely thanked these two ladies,  gave James lots of hugs and kisses, and headed home to get some sleep.  

I honestly cried the entire way home.  James was so off today that he spent most of the day pushing me away, telling me no, and refusing to talk to me other than moaning....I felt like he lost trust in me as his mother.  It was a terrible way to end the day, and I found myself missing my little boy more than I can say.  Today was a true low.  I hope with all my heart tomorrow will be brighter.  I didn't take a ton of pictures today because it was just a sad day, but I"ll post the few I did take below.

 After the chest tubes were pulled-it took a lot out of him, but he was also visibly more relaxed once they were out.

This was before having anything taken out (they are miserably out of order, as is James).

 I tried to make him a little happier by reading his favorite books-he was not having any of it.

 This is him utterly ignoring me after everything got pulled.

 Earlier in the day when he was eating his thickened water and banana-this was before they took his central line in his neck out.