a little time away...

From the moment we left the hospital after Joshua's surgery, Jon & I have been dreaming of getting away, just for a couple days. We finally found the time! We spent last several days in Aptos & it was amazing!

We spent time playing at the beach, we spent an afternoon at this park, where we picnicked...

We hiked through a beautiful forest...

We explored all of the typical sights of the area...

We watched the sunset...

And we spent an evening at the Santa Cruz Boardwalk. We rode the Merry-Go-Round & a couple of roller coasters. Yeah I know, what kind of moron would put their child who's just recovered from major open-heart surgery on a roller coaster?? Uh, that would be me.  I don't recommend it. In my (weak) defense, it didn't hit me until midway through the ride when I looked at Joshua & saw the sheer terror in his eyes...this kid's heart wasn't made for roller coasters (but his soul was). Thankfully Joshua lived!  In fact he hasn't stopped talking about it since. He keeps reminding me that he's "the bravest boy ever" and he can't wait to go again.

I'm pretty sure I just lost my chance at being named 'mother of the year' yet again, but there's always next year.
Everything feels so normal again now that Joshua has recovered. It's an even better normal than I anticipated. The kid can go, go, go all day long! It can be exhausting, but I love it! It's something I'll never take for granted...it really is a miracle!

silly

Big sisters pretty much know everything. Pretty much.

A new man

The Fontan has given Joshua energy he has never know. He's loving it. We're loving it. He runs in circles around the kitchen island, time after time - just because he can.
On Saturday we went on a five mile hike.  We brought the double jogger because we figured the boys would ride the majority of the time. Wrong. Josh walked probably close to 3 miles of our hike.  I use the term 'walk' loosely, because he was like a hound dog darting from one point to the next, checking everything out along the way!
When I think back to pre-Fontan, I am filled with gratitude that he's doing so well now. He couldn't walk more than 20 yards without losing his breath, climbing the stairs was a challenge & though he liked independence, he preferred riding in a stroller to walking because he didn't have the strength. It's a miracle that his heart can keep up with his legs finally!
Today he is 6 weeks post-op.  He's officially hit the recovery mark - and he's a new man!

(taking a water break on our hike - wouldn't you know, the one time the boys both look at the camera the girls are day dreaming:)

One month later...

Joshua seems as though he's turned a corner the past few days. Previously, his recovery seemed to be moving slowly -  however he's been doing noticeably better lately! He's running around and playing just like he used to. I can tell he's still progressively getting better, so it's great to see.
He visited the Cardiologist last week & he went from taking 6 doses of medicine daily, down to only 3! He's tolerated the change well & he willingly takes his meds again. 
He's still looking kind of blue, his sats are around 88-90. I think just as his energy level and drive have improved with time, so too will his coloring & his sats.  He had the fenestration, so his sats will probably range in the low 90's rather than high 90's when he's made a full recovery. 
I can't tell you how good it feels to have the Fontan behind us, spring ahead of us & our energetic little boy back & (nearly) better than ever!
What a difference a month makes!

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:)

a few more days...

 

In a couple of days we'll load up the car & head to UCSF, unsure of when we'll return. We're hoping to fall within the 'typical' 7-10 days, but we learned with the Norwood & Glenn that it doesn't always work out the way you hope.

The past several days we've been busy getting our lives in order so that family can slide into our place & take over for us. Jon & I will take Joshua to UCSF, & my family will take over our typical family/home responsibilities.  Its hard to imagine life goes on for the rest of the world, as we face this trial.  But to be honest, we feel encouraged as we enter this phase of the journey.  

Again, we are endlessly thankful for all of the help, the kind words, the prayers. I'll do my best to update the blog as things progress. I may not get to post substantial updates, but I'll do my best to keep the blog current.

**Thanks Carrie for snapping the cute picture :)

giving thanks

Well here we are, about a week away from surgery. The time has passed by so quickly, as I knew it would.
I had been feeling pretty well prepared for surgery, but I realize I still have a lot to do.  Josh is still over-the-moon excited to go to "Sam Francisco"...he is convinced Dr. Azakie is turning him into Ironman. I've told him otherwise, but he's pretty sure he's going to wake up post-op "red & flying!"...his words.
I'm happy that he doesn't have anxiety leading into surgery, although I don't want to mislead him, so it's a balancing act.

I wanted to say thank you to those of you who have been eager to help us through this process. I can't even keep track of all of the offers we've had to babysit, cook meals, drive to-and-from school, etc. We appreciate it so much. We feel very loved. Last night we had a beautiful plate of cookies dropped off at our house from some of the girls from church. It was incredibly thoughtful & very much appreciated! We are blessed to be surrounded by such caring friends and family! Thank you all!

Lastly, Joshua's best buddy recently gave him this awesome Play Mobile set:

It's so cute & Josh has had SO much fun playing with it! Such a thoughtful gift! We are beginning to feel spoiled!

 

As always, we so appreciate all of your kind thoughts and prayers.  We've definitely felt lifted by prayers preparing for next week. Thanks:) 

Second time's a charm?

 

We're giving the Holter monitor another shot! Last time it stopped recording six hours into the test. Hopefully this time we'll get 24 straight hours recorded. Wish us luck!

Happy Heart Day!

 

3 year Glenniversary - CHD week

Three years ago today, Joshua had his 2nd open heart surgery. He was 5 months old.  He had a rough recovery, but as soon as he was 'out of the woods' he thrived & never looked back! I am amazed daily by how normal a life he leads. People are always surprised to learn about his heart defect (if they ever learn of it at all). In fact, think many people don't realize the severity of his defect because he's doing so well! 
We are incredibly blessed to have Joshua in our lives. He has changed our lives for the better. We have learned so many life lessons that we otherwise may not have. 
We found out of his heart defect during pregnancy. We had many worries about  his quality of life. We wondered if the majority of his life would be spent in pain, dealing with sickness, hospital stays, medications, learning delays, feeding issues, etc. While we've experienced all of the above in small doses, in general Josh has exceeded our expectations. Sure we've had hard times, but overall his life has been a really rewarding journey.
We would do it all over again in a second.  It isn't always easy, but it has always been worth it! 
On a side note - surgery is 3 weeks from today. I'll start requesting prayers now! :)

Getting set...CHD week

 

Last week was the Holter monitor & this week it's the dentist. Joshua got a good report yesterday...no cavities!!! Hip hip hooray, thank heaven for that! So we have yet another appointment checked off our list. Today Joshua said goodbye to his gymnastic classmates & teacher. We are officially on lock down, no more church class, no more gymnastics, no more playdates. We have 3 more weeks that we HAVE to stay healthy. That's right, surgery is in 3 weeks!

In that time we have a couple more things on our to-do list, but we are getting there. As surgery draws nearer we are feeling very encouraged, but have moments of anxiety every now & then. Luckily they are just moments.  

I have decided that I will donate blood for Joshua's surgery, we have the same blood type. My dad is going to as well. Joshua has been the recipient of countless units of blood, thank heaven there are willing donors! I am going to make an effort to give blood more frequently since we have directly benefited from others who made the sacrifice. In honor of CHD week you should go to your local blood bank & donate too! You never know who your blood will help or perhaps even save!

CHD Awareness Week

This video is pretty awesome! It's a story of a little girl with Joshua's same diagnosis. My favorite part of the video...it features UCSF, our AMAZING surgeon, Dr. Azakie  & one of our very favorite nurses! They feel like family to us, it's really cool to see them recognized in this way!

Holter Monitor - CHD Awareness Week

 

Joshua wore the 24 hour Holter monitor this past Friday-Saturday. I was a little concerned about the whole thing, but it went very well. I always have expectations that things aren't going to go smoothly, and I always realize that I under estimate my boy. He loved wearing this thing! After it was place on him, as we headed for our car, he sang, "I am a lucky boy, I am a lucky boy, I get a new cell phone!" (he loves to sing & has the funniest little singing voice:)

I suppose it's all perspective. He thought it was pretty cool...fine by me!

Although I won't be surprised if he has to start all over & wear it again because I caught him pushing buttons on his "cell phone" and suddenly the screen changed on the device. I'm pretty sure he reset it.  But hopefully I'm wrong & they have usable results.

On another note...today is the first day of Congenital Heart Defect Awareness Week.  I wish I had time to write a thoughtful CHD post each day this week, but I don't right now. And maybe some of it has to do with the fact that surgery is on the horizon & I don't want to remember the seriousness of Joshua's condition just yet.  I'll have plenty of time to live that reality in March.

There is such a push to spread awareness because CHD's are the #1 birth defect. In fact, CHD's kill more children than all pediatric cancers combined, yet gets 1/10th the funding. The medical community has made great steps with limited funding. Imagine what could be done with real research money! The first step is spreading awareness!

Picture day...

 

This week in gymnastics the kids had their official gymnastic pictures taken. Before class I pulled out my camera for a few practice shots. Umm, lets hope the photographer did a better job than I did!

My view of the pictures they were taking was from the back. They could be a disaster, but lets hope for a pleasant surprise!

This week...

 

This week Joshua is going to wear a Holter monitor for 24 hours in preparation for next month's surgery. I'm hoping it'll go well, but you never know with a 3 year old boy...he may decide it's not so much fun being attached to a device after a few hours. I'm going to have to remind him that he's Ironman. We've gotten away with a lot by telling him he's Ironman! Hopefully it'll work again.

On the drive home from UCSF, after having his cath last month, Josh shouted out, "Wait, I didn't get to play in the play room, OR see Dr. Zakie!" I think he was hoping that Jon would flip a U-ey right there on I-80, tires screeching. So naturally, he was thrilled when we told him that we are taking him back to "Sam Francisco" in March.  Of course he doesn't realize what this trip to UCSF entails. As surgery draws near, I will talk to him more about what to expect. I know him well enough to understand what he's ready to hear & when he's ready to hear it.

I am very lucky that he has no negative memories associated with hospitals, doctors or nurses. That's not to say he hasn't had any negative experiences, because after all he has undergone 2 major open-heart surgeries, surgery to repair his diaphragm & pacemaker surgery, requiring two 6 weeks stints in the hospital.  And even after all that, my sweet boy is hopelessly excited to go back. We'll just ride that wave as long as possible.  We know that it will crash ashore inevitably. 

But in the mean time, we'll continue enjoying his cute prayers that go something like this:

"Dear Heavenly Father, thank you for this day, please bless the food & please bless Sam Francisco. In the name of Jesus Christ, Amen."

Whether we are waking up, eating, or going to bed he offers the same prayer. I love my boy.

Fontan

 

I got a call from UCSF this week, looking to schedule Joshua's Fontan. They wanted to schedule him for Feb.9. But that is just way too soon. We went ahead and scheduled him for early March. Reality is setting in. But at the same time I feel a sense of peace. This is the right time, Josh is healthy and strong. I know he'll do well.  I need to remember, in the past he went into surgery very unhealthy, therefore he struggled with recoveries.  This time will be different because he's done amazing since recovering from the Glenn.
We have 6 weeks until surgery. I know it'll fly by so quickly.  It's funny to think that we spent 6 weeks in the hospital for his Norwood and then again for his Glenn. Talk about a l-o-n-g 6 weeks!
Well these next 6 weeks we intend to do a couple of things; have fun and stay healthy!
We really appreciate all of the words of encouragement, thoughts & prayers that have been said on our behalf.  It really lifts us to feel all of the support!

In his element

Joshua recently started gymnastics & I have to say, it's perfect for the little guy!

Josh is constantly hanging, swinging, flipping, running & jumping at home, so gymnastics is heavenly for him! 

It's a place where he can live out his acrobatic dreams!

 

And his teacher is a perfect match for him...I'll take some video in the coming weeks, it's so fun to watch my little monkey!

...

As far as his heart goes, we met with Dr. Rivera yesterday for a post-cath check up. We decided to have surgery scheduled within the next couple months.  Dr. Rivera let us know how encouraged he is with the findings of the cath. Hopefully the Fontan will go well, based off the fact that he'll go into surgery healthy & strong.  I'll update with more details later.

Success!

Never in a million years would I have expected yesterday to turn out as it did. From start to finish, Joshua's cath couldn't have gone any smoother.  Based on our previous experience, I mentally prepared for a bit of a bumpy trip. Josh had very tough recoveries after his first two surgeries, so naturally I have anxiety when it comes to these things. I was mostly nervous about how he would fair emotionally. 

Joshua has a really good relationship with Dr. Rivera, his cardiologist, and has no problem going to doctor appointments. However, I was afraid that the hospital atmosphere might scare him & I was nervous about how he'd react.
Well, he was just normal Josh! Talkative & social. He wasn't thrilled to trade in his Batman t-shirt for the hospital gown, covered in clowns...but who would be? But other than that, he was in a great mood all day.
Since we were the second case of the day I worried he would have to sit around for countless hours, bored & hungry. That was not the case. The minute we walked into the unit he was surrounded by nurses who couldn't believe how big he had gotten, nor how confident he was. Then he was whisked to his bed and the next thing we knew his vitals had all been taken & he was wearing the clown hospital gown...it happened that fast...no time to think about being hungry!
It was only about 30 minutes before we were up at the lab waiting to go in for the cath.  In that 30 minutes he met Beatrix, the child life specialist, who was amazing. She kept him in good spirits, and distracted. He was also given a dose of some anti-anxiety meds while he waited to be taken. When the meds kicked in his eyes got wide & he began slowly swaying. He was a happy boy. He was "balloon guy" as he called himself!

When it came time to go into the lab, I was holding him & he whispered to me, "Mom, I'm scared."  It made me feel bad for him, but he was still very calm, just laying in my arms...the medicine must have had something to do with the calmness.

Then it was time for his IV's to be placed. He wasn't happy about it. But he did a good job anyhow. He cried, but didn't fight it, thank goodness.

After the IV was placed they began to medicate him more heavily, to get him to sleep etc. This was the toughest part of the day.  He tried fighting the meds & was crying and thrashing around as he fell asleep. But it was only a few minutes & then he was out. We kissed him & said goodbye.

We were told the procedure would last between 2-4 hours, and they would give us a 40 minute heads-up, by paging us, before we needed to go back to his room.

Jon and I were scheduled to give blood (for a genetics study on HLHS) soon after saying goodbye to Joshua.  So we gave blood and then grabbed a quick bite to eat.  After eating we were discussing what we should do next, assuming we had a couple more hours to kill, but we were paged & told to meet Joshua in his room in 10 minutes!

 The procedure went incredibly fast, just over an hour! Joshua was returned to us, still sleeping. We were told he needed to lay flat for 4 hours & if everything went smoothly, he could be released.  I was worried this would be the hardest part of the day, but he slept the whole time. We ended up needing to wake him & feed him, to make sure he could keep his food down so we could leave.

We woke him & the first thing he said was, "Where's my Lego's?" My mom had sent a few presents for him to the hospital, and it was the first thing on his mind. We fed him chicken nuggets and french fries, as well as a ton of Gatorade & we were sent on our way!

It really couldn't have gone any better!

And now for the findings...Dr. Meadows, the cardiologist, said that the procedure went exactly how they hoped. He said Josh's numbers couldn't have been any better & he is a candidate for the third surgery, the Fontan.  He said "Josh is a glowing example of what we hope to see!" He went on to say that Joshua's once paralyzed diaphragm wants to move. It was paralyzed after his first surgery & he was unable to breath with it obstructing his left lung. He had surgery to have it tacked down (plicated) when he was about 3 weeks old. The good news is, it wants to work again, but in order to allow it to, they may need to operate to un-do the plication. Dr. Meadows said that Josh's heart looks so good that he is fairly certain it's the diaphragm that has caused him to work so hard to breath lately.  

His shortness of breath has been quite worrisome to me, so its a miracle to learn it has nothing to do with his heart!  And whats better, its can possibly be fixed!

As you can imagine our prayers have been answered.  We are so incredibly grateful. I don't have the words to express just how blessed we feel today.

Thank you all so much for your thoughts, prayers and support, it really does help to feel so much love!

And thank you to the staff at UCSF, you're all amazing!

(all photos were taken post-cath)

Great news....

I'll post all about it tomorrow!

Today is the day...

Today is Joshua's cath at UCSF.  He is scheduled to be the second case of the day. Please say a little prayer for us.  I will do my best to update if I have an opportunity.

Once there was a snowman...

Maybe his proudest moment!!!

(he had help:)

Sweetheart!

 

My little sweetheart painted me "heartses" on Christmas morning! Sweetest thing ever!!!

Congrats Grad!

Today was Joshua's last day in the nursery at church. In 2011 he'll be a Sunbeam!! He will get to go to primary with Abby & Callie! We're all so excited!

Josh talk

 

Yes, I am using another picture of Josh in his jammies...I know, this is 3 posts in a row. I will take new pictures soon!

Anyway, I wanted to write down some of Joshua's vocabulary because it makes us all laugh daily! Josh can say any word he wants to, but lately he makes up new words, shortens words, gives people nicknames etc & I want to write them down so I never forget!

Momers - Mom

Abbers - Abby

Callers - Callie

Sammy boo - Sam

Weedow weedow - Dad

bo-bee - pacifier, aka bobo (which he hardly uses anymore:)

chocolate go-gee - chocolate milk

wad - water

nummers - his medicine

troubie - trouble

Cutie matootie - this is what he calls cute babies

Of course now that I'm making an effort to remember these silly words, I can't! I'll have to keep adding to this post as I hear them!

Dear Santa,

You don't scare me one bit!

love,

Joshua

p.s. But Sammy doesn't like you so much!

family picture...not quite!

When the kids put on their Christmas jammies for the first time, I couldn't help but line them up for a quick family picture. It only took about 2 minutes before it turned into a dog pile. Better luck next time, I suppose. :)

update & cath date

 

A couple of weeks ago I spoke with the scheduling department at UCSF & scheduled Joshua's cath. Initially, we scheduled it for mid December, then I freaked out a bit & called back 5 minutes later & rescheduled it for early January. It is easier to digest knowing it's after the holidays, maybe more importantly 'next year'.

So we are on the books.

Yikes.

And phew.

Clearly, I don't know how I feel about it yet. 

What I do know is, the pacemaker adjustment seems to be helping Josh. It's subtle, but definitely improvement!!!

So the plan from now until January is to relax and enjoy ourselves.

That's the plan!

Happy Halloween!

Love,

Batman & Robin

Meeting Paul...

Today was a big day for Joshua, for a couple of reasons...
For one thing, after Joshua's appointment on Monday, Dr. Rivera contacted me & told me he had been thinking a lot about Joshua. He told me he wanted to adjust his pacemaker settings in order to allow his heart more rest. The logic makes a lot of sense & he had it adjusted this afternoon. I am excited for this change, it will allow his heart to beat 20 beats less per minute when he's resting! Hello weight gain, hello energy!!!
We are very excited about this development & are very hopeful we'll see results!
And the other reason it was a big day - we met the infamous Paul Cardell in the flesh!!! We listened to his story, his testimony & his amazing music. Amazing, amazing and some more amazing!
I seriously felt like a 12 year old meeting JBiebs. Okay, that sounds weird...what I mean is, I was excited, nervous & emotional (he surely thought I was unstable). Nonetheless, it was really great to meet him, he was such a genuinely nice guy. I was hoping his wife & daughter would be there too. She is a remarkable woman & his daughter is a doll.
I highly recommend his CD's & though I have yet to read it, his book..he's an inspiration!

The Big Cardiology Check Up

Today was the day. Joshua spent the afternoon at his cardiology appointment & it went well. He was a good boy, a little nervous at first, but very good. 
So here's what we learned.... Joshua's heart is still doing well.  However, he is at a point where we can get the ball rolling on the Fontan (Joshua's next open-heart surgery), if we choose. We have some say in the matter,  because he is stable enough that we can do it when it's convenient. I don't know that there is ever a convenient time for open heart surgery...but since it's inevitable, it's nice that we have some say in the matter.
We went into the appointment today knowing that the time for surgery is approaching. After more discussion, Jon & I decided to have Joshua's case turned over to the doctors at UCSF for review.  If they give us the go-ahead, Joshua will have a cath scheduled some time in the next couple months (probably by the end of the year) & then surgery within six months of the cath. 
We are very happy to see that Joshua's heart is holding steady. He was using his pacemaker today when he was being examined, which is the first time we've been aware of him using it at all. The doctors had previously discussed having it removed during the Fontan, since it wasn't being used. That's no longer the case & he'll keep it. The pacemaker gives me reassurance. I have grown to like it, so this news is ok in my book.
Another concern we've had, as I have mentioned, is his shortness of breath. He gets winded so easily & Dr. Rivera suggested it could be asthma. I am not certain that's the case, but he prescribed a breathing treatment to try on Joshua before activity and/or when he's sick. We are going to give it a shot. I'm really hoping it helps & if it does, it'll be amazing & who knows, maybe we'll choose to wait on the Fontan a bit longer. Our main concern right now is Josh's decreasing activity level...so if this breathing treatment helps, then we are in good shape!!!
We feel incredibly blessed to be in this position. We are so grateful that we have flexibility in scheduling & a stable little boy. We'll keep you posted once we hear back from UCSF with their game plan.

cheap shot

Sam is notorious for taking cheap shots on Joshua. He's only a 1 year old, so it's to be expected. Tonight after getting hit upside the head with a toy truck, Joshua said to Sam in a deep voice, "I'm gonna roll you out like play dough, Boy."

Them are fightn' words.