little by little...

I am asked several times daily how Joshua is doing & It's been a little while since I've posted...so it's time for an update! Joshua has been doing a little better each day. While it feels like surgery was 3 months ago, the reality is - it was just about 3 weeks ago! Hard to believe. We are so incredibly lucky that our hospital stay was so short & Josh has been able to spend the bulk of the recovery process (6 weeks) at home. 
He's hasn't fully returned to his old silly self, but we see glimpses of it daily.
He appears to be regaining some of the muscle he lost laying in bed & his energy level is slowly improving as well. 
He still complains that his "tummy hurts" & grabs his chest when he exerts himself too much, but he's saying that much less regularly.  All in all, things are looking good!

I wanted to post a couple of pictures from over the past week and a half. Joshua had 2 very special deliveries last Sunday after church.

First, a friend from Primary dropped off two envelopes spilling over with notes, drawings & stories from the children at church. It was so thoughtful and made us feel so loved! They also delivered some yummy treats, that lasted all of 5 seconds!
Later that same evening the Young Women from church delivered a huge basket full of toys, games & fun galore! It not only made Joshua's day, it made his week! It was so kind of them to pick out so many awesome gifts & then stop by for a visit. The kids had such a great time playing with them.
These acts of kindness couldn't have come at a better time. Sunday morning & afternoon had been a really difficult day for Joshua. I was personally feeling very burnt out. Then it all changed because these dear friends reached out to us. Thank you so much for thinking of us & lifting our spirits when we really needed it.
A couple days later, on another particularly hard day, I walked to the mailbox to find it jam packed full of envelopes - all for Josh! His cousins sure do look out for him! :) And we feel so blessed to have so many people who really, truly care.
Thank you all for the continued support...I feel like we are over the hump & good thing are in store!

Getting back to 'normal'...

Looking back at the Fontan, I have to say I wasn't prepared for how difficult the whole process would be psychologically for Joshua.  We've been home for a couple days & it's clearly going to take a while before he can get over the whole experience (if that's even possible).  He did so well the first 7 days of his hospitalization, it was hard, but he was cooperative & sweet. However, he got to his breaking point and everything within him seemed to change.  I mentioned before it was in the middle of the night when he was abruptly woken to drink an absurd amount of potassium, the nurse was very firm with him & refused to give him his pacifier. From that point on, everything aggravated him; temperature checks, blood draws, IV flushes, the blood pressure cuff & even medicating him.  He lost his will to go to the playroom, to have conversations, to play with toys, to do anything he once enjoyed.  The experience which was already hard, became almost unbearable at that point.  Thankfully, we only had 4 more days...which really dragged. But eventually our time came & Joshua was released.  Although getting him released took a fair amount of twisting Dr. Azakie's arm.  But the doctor is always reasonable & listens to our concerns...one of the many reason we appreciate him so very much.  

The Fontan was a different hospital experience because previously we spent 90% of our time in the PCICU, where the nurses are absolutely top notch, amazing in every way. They are as compassionate as they are medically skilled. Joshua would have spent his entire hospital stay in the PCICU if I had my choice, but it's reserved for the critically ill & this time, Joshua only required their expertise for 2.5 days.  The majority of his time was spent in the step down unit. Josh's bed was in a bay with 2 other beds, not much space & very loud night and day. The nurses had a couple patients to care for, and a much more 'relaxed' attitude about patient care.  Actually, there were 2 nurses in this unit who took Joshua under their wing, but unfortunately they didn't work 24/7 (we sure wished they did though).  

Another reason this hospitalization was different is because our previous NP (nurse practitioner) Megan, who was with us every step of the way in the past, no longer works at UCSF.  This time around, we relied heavily on our bedside nurse for 'big picture' information, whereas before Megan would communicate & check in with us several times daily.  UCSF is a teaching hospital, meaning each day we would have any number of residents, fellows, attendings from all departments drop in & check-in on this or that...but Megan was always a constant, the only constant during the whole process. She knew every detail about Joshua & we knew that nothing would be over looked by the team with Megan's watchful eye. In her absence, we often felt lost, unsure of where we were headed, just plain confused.  We sorely missed Megan this time around.  She actually came & visited Joshua twice during his stay, because she's just that kind of person.  

Now that we are home, Joshua is slowly acting more like himself.  He has broken down crying twice,  asking why they put needles in him. It just breaks my heart that he can't understand why this all happened.   Our child life specialist, Beatrix - who we SO appreciated  - gave us a lot of good advice to help Joshua cope & understand the circumstances.  But even so, it's going to be a long road to emotional recovery.  He's definitely happier now that he's at home, but certainly not totally himself. 

I'm just so glad to have the bulk of this experience behind us.  Who would have thought that 6 weeks in the hospital for his Norwood & again 6 weeks for his Glenn would be easier than 11 days in the hospital for the Fontan?? I wouldn't have guessed it. But the worst is now behind us & we look forward to brighter days with our 'pink-er' little boy.

(I've had the hardest time arranging my pictures with blogger...they are really random, but I wanted to post a couple of them anyway - even though the placement isn't really relevant in this post.)

Home sweet home!

We got home last night, yay! I'll update later.:)

Post-op Day 9

Today was another long day in the hospital. Relatively uneventful, thankfully. Weekends are always slow around here, which isn't all that bad, but Joshua is really sick of being here. He was crying this afternoon and said that he wants to stop crying, but he just can't cause he wants to go home. So sad. I'm hoping that our days are numbered here, you just never really know. He was visited again by his siblings, grandma, grandpa and aunt Molly. It was good to see them.
We are all longing for our beds at home. And undisturbed sleep. A night with no blood pressure checks, temperature checks and certainly no blood draws or middle of the night meds. Just a quiet night in our own beds...sounds like heaven right about now. Only a few more days I think.:)

Post-op Day 8

Despite the fact that we got absolutely no sleep last night, Joshua had a pretty decent day.  We basically had to force him to the playroom this afternoon, but I'm really glad we did because he had two hours of fun!

He was then visited by a friend, and later a few family members.  Let me just say, Joshua has been so spoiled! Every time he's visited he's given more gifts! We seriously have a mountain of gifts. And he's also received 2 packages in the mail full of toys. The nurses think it's funny that he's got SO many toys & they just keep coming!

Between the playroom & the visitors, Joshua stayed distracted & in some-what good spirits.

He was taken off the heparin IV today, so we no longer have to lug that big pump around!  He's on .5 liter of O2, which he'll hopefully be weened of on Monday. And other than that they are working on switching meds from IV to oral so that we can get out of this place!!

Joshua is getting stronger each day. He's still a little wobbly on his feet, but he's getting around better each day. His legs are so incredibly skinny. They were never chubby, but the muscles aren't what they used to be.
No word of when we'll be home free, but hopefully by Monday we'll have a pretty good idea of when we can make a break for it. If everything continues to go smoothly, we should be home by next weekend. Yay!

(The top picture is of him playing a little basketball in the playroom & the second picture is of the giant marble maze he & Jon constructed. Joshua was so impressed by it.:)

Post-op Day 7

Joshua was visited by the Giant's World Series trophy this afternoon! It was quite a sight! The unit was jam packed with on lookers & even trophy security. It was a pretty big deal, even though Josh wasn't too amused. I think deep down he was excited, but he'd never show it.:)

You may or not be able to see, they opted not to place any chest tubes today. Hooray! I'm so glad I didn't let them yesterday....as Dr. Azakie said, "Mommy knows best!" (I wish.)

He's having a pretty decent day today. He just walked down the unit to the bathroom & went #2 on the potty. Such progress today. And the appetite is fully back.

His brother & sisters are coming for a visit in a bit to top off the day.  Not a bad day in the hospital. :)

(He won't have any parts of the hospital gown. He had been in nothing but a diaper, but now he wants to be dressed in street clothes. His stubborn side is back...& I like it!)



Post-op Day 6

Yesterday evening we went to bed knowing that Josh may possibly need new chest tubes placed this morning. When we woke up, all of Joshua's food was gone & a big NPO (aka 'no food or drink') sign sat in its place. I was surprised by this. It was never discussed with me, so when Joshua woke up asking for breakfast (his first time with an appetite since surgery) I wasn't what you'd call 'happy' to learn he was scheduled to be NPO.  Minutes after asking the nurse about the NPO order, the surgeons walked in & were faced with an unsettled momma bear. I'm pretty sure Dr. Azakie would classify me as unstable, haha! (I'm running on empty in the sleep department.)
They were coming to discuss chest tube placement but I told him, given the fact that Joshua had just gotten his tubes pulled & finally got off the heavy drugs, he finally had an appetite & was able to hold down food - I felt that the timing of placing new tubes would be a step in the wrong direction. I just wanted a little more time to give him a break from all the madness. Time to recuperate. Time to let the diuretics do their job.
His response was "That's fair, we can give him another day." He also said that the left side of his body was fluid free, which was a new development & that its possible for the right side to clear up too with just diuretics.
So the day was spent balancing electrolytes (which was accomplished), getting Joshua moving, lots of chest pt and lots of diuretics.  I'm not sure what they'll decide to do tomorrow, but we accomplished a good amount today. His sats are up in the 90's now. I feel so much better tonight. 
On the flip side, last night Joshua took a major step backwards psychologically (after he was woken at 2:30 am & forced to drink about 2oz of potassium- pacifier withheld - just plain mean). He's stopped cooperating with the nurses, he's been crying a lot, he didn't even want to be in the playroom when we took him this afternoon. As a parent, that is maybe equally hard to watch as seeing him in physical anguish.  He has had a few moments of brief happiness though. First, we had about 2 hours of playroom time. Joshua had no interest. We did all we could to brighten his afternoon, but no dice. So we hesitantly went back to the unit & found that Joshua had received a package in the mail. It was from uncle John & aunt Ado. Inside were some very thoughtful toys, including a squirt gun. BEST PRESENT EVER! We filled it & walked through the halls & Joshua dowsed everything in sight! Then we went to the 'fish tank waiting room' & he shot at all of the little fishes. It made him so happy! It was pretty hilarious! 
It was short lived, but very needed. 
Another high point for Josh today, he sat up at the edge of his bed, unassisted & ate dinner with me. We had the laptop on the table & scrolled through the blog & giggled at all of the pictures & shared fun memories. It was really great for us both. 
Joshua is sleeping now, hopefully through the night. 
Thank you so much for your continued prayers. We certainly felt them today.
(If you can't tell by my posts, I'm pretty sleep deprived, so forgive me if I'm hard to follow.)

Post-op Day 5

Chest tubes came out today. But it looks like they are going back in tomorrow. Pretty upsetting. It feels like a huge step back. But I'm praying for a miracle tonight. I can't even imagine the agony of being awake and having a tube placed between my ribs. I can't imagine going through any of this myself frankly.
But my parents brought the kids for a visit today, which was officially the high point of the week. And he's been vomiting less. Thank heaven for the little things.

Post-op Day 4

Today was not the 'better day' that we had hoped for. Josh had another tough day. His chest tubes are still draining.  His x-ray shows more fluid, so they will remain in place for a few more days.  Misery. The x-ray also showed a partially collapsed lung. And he's very low on potassium which presents another problem; his only line that was safe to administer potassium, as well as draw blood, was pulled today. It was his Fontan line & now it's out. Because it was pulled today, they had to put in another IV. Joshua is very hard to place a decent IV, so when his nurses hoped to get an IV placed that would also draw blood, I was really nervous.

After the Dr came in and pulled his Fontan line, an IV nurse came in and worked a miracle. She popped an IV in Joshua's arm in one try (no digging either) & headed out the door. She was in & out in minutes, she's my hero!

Unfortunately, Joshua's good luck ended there. He had 2 serious vomiting episodes that were so painful & taxing.  During that time, Joshua's heart rhythm got all nutty. They are thinking it may be due to his electrolytes being out of whack. So they are working on leveling that out.

He's been sleeping ever since the last vomit, so Jon & I have taken turns holding him.  Hopefully tonight he'll get some much needed sleep, which may mean I get some sleep too. 

The highlight of our day was dinner...a fellow heart mom, Jen (Magnus' mom)brought us a ton of delicious food! It seriously made our day.

Jon's parents also visited, but unfortunately their timing wasn't optimal for visiting due to the craziness of our day. But still nice of them to make the trip & I know they were just happy to see Josh. :)

Again, we are hoping that tomorrow will be our day & things will go great. 

Post-op Day 3

Today was a little better for Joshua. He rested a lot today, mostly I think because yesterday was really difficult and last night was pretty sleepless. But the good news, he's been moved out of the ICU and over to the transitional care unit. I still can't believe that we haven't hit any bumps in the road. Don't get me wrong, it's amazing, just so different for us that I'm nervous something will suddenly go awry. I don't want to jinx it.
We are hoping they'll pull some lines tomorrow and dare I say pull his chest tubes. The darn chest tubes have him in a lot of pain. But my Josh is such a trooper through it all! He's been so cooperative. He's such a good little boy.
Another challenge Josh has faced has been extreme nausea and vomiting. His pain meds were switched tonight on a trial basis and thank heaven he seems to be in much less pain and nausea free! He's eaten 2 gold fish and as many sips of Sprite...and has held it down!! And he actually smiled and got chatty after being given the new medication. This is a new development, so I hope it lasts.
It feels like we are headed in the right direction. :)

Post-op Day 2

Yesterday was pretty rough for Joshua. He had a lot of discomfort and restlessness. It made for a very long day. It's all a part of the process, probably the worst part in my opinion. But hopefully the worst has passed. He has done a great job moving around and sitting up etc. He sat on my lap several times out of bed which has been nice. It's good for him to move around.
He had his 3 favorite buddies visit in the evening. Despite the miserable day, it boosted his spirits. It was so nice to be together as a family for a couple hours. We are so appreciative of my parents and sister Molly for taking such good care of our 3 other kids in our absence.
Hopefully today will be a better day. Josh has been moving forward, which is great news. He's had such amazing nurses, so kind and gentle. He has no anxiety because they are so good with him. It makes such a difference.
I've got to run, Josh needs my undivided attention. Thanks for checkin in on us:)

Post op day 1

Well here we are post op, day 1. Joshua had a very restless night, but on the bright side, medically, he's been just fine. He insisted that I lay in bed with him, so that's where I've spent my time. I'm actually holding him right now. Any movement of his body is very painful, so I'm trying hard to be careful with his little healing body. He's been putting off fluid like a champ all on his own, but was just given his first dose of lasix, which will help him put off more fluid. As of now, no major concerns. Things are looking good!

By the way, I know a few of you wondered if he was extubated in the OR...yes, he was. Pretty amazing. Also, his coloring is great! I'll try and post a picture or two later.

He's back

Josh got back from the OR at 4:00. Dr. Azakie kept him in there to monitor him for a while. He's sleeping now, but woke up very upset. Dr Azakie said he was waking up in the OR asking for me. My poor boy. I wish I were there. Now I'm by his side, posting from my phone as he sleeps. Thank you for all your kind words, it's helped us a lot!

and he's done (well almost)

We received word that the Fontan is complete & the new pacemaker has been placed...and that it went smoothly!!!
He is still in the OR, we aren't sure when they'll be finished. But so far so good!

In the OR

Joshua was taken back to the OR around 7:20 this morning. He had a restful night and woke up in good spirits. Jon and I are waiting for word from the OR. We expect they'll be done around 1:00ish. In addition to the Fontan he's having his pacemaker replaced, which may add some time to the procedure. Thanks as always for the support!

Pre-op

Joshua is napping so I thought I'd give a quick update. We arrived to the hospital this morning. We've had beautiful weather today. Josh had a busy afternoon of the typical stuff; blood work, echo, chest x-ray, EKG and now a nap.
He is doing really well. Of course he didn't enjoy the 2 blood draws, but he bounced back quickly.
He'll be the first case tomorrow morning, so around 1:00ish he should be done.
Thanks for checking in on him!

(pictures of Joshua's evening...a nice long nap, then almost 2 hours in the playroom, followed by ice cream:)