Just Joshua

my sweet boy...

2012-01-09T09:49:00.000-08:00

This picture is a few months old, but I just found it sorting through some old pictures. I like it. Josh is so sweet. :)

Christmas season

2011-12-29T14:50:00.000-08:00

We had a wonderful Christmas season this year & I figured I'd share a bit of the fun! Santa came & brought light sabers galore. I feel like that's saying enough on the subject because everyone knows how much this boy loves Star Wars! So we've seen a lot of this lately:

Christmas day was really special for us. Seeing as it fell on a Sunday we went to church Sunday morning. Joshua's older sister Callie sang a solo at church. It was a very touching moment for us and we were so proud of our little girl. So many family members came to watch her. It was such a treat for her to stand and spot family members in the crowd who she didn't even know were coming. We had known most people planned on coming, but figured they'd be tied up with their own Christmas morning traditions....however, everyone made it out! It made Christmas day even better than it already was!

Now back to our Joshie boy!! Jon took Joshua out for his first "hunt" last week, before Christmas. He has always wanted to do this type of thing with Josh & the timing worked out perfectly for our hunters! I use the term 'hunt' loosely...more like hiking...but Josh got to fire that gun a time or two & it was an experience he'll never forget!

As for Joshua's heart, people ask me frequently how he's doing. He's doing okay. He's progressing slowly, but he is progressing. I guess that's all we can ask for at this point. I've realized lately that his mood is closely linked with his physical well being. He was quite moody in the weeks that led up to his hospitalization & he's beginning to be much more like his old self again. Now when I wonder how he's feeling I start by noting his temperament that day & its usually a good indicator of how he's doing on the inside.

Do any of you heart moms notice the same?

Anyway, things aren't bad & we are excited to see what the new year has in store!

Happy New Year to you & your family!

(by the way, Joshua owns more than one shirt...he just prefers to only wear one of the shirts he owns!)

Merry Christmas!

2011-12-24T08:45:00.000-08:00

love,

The Smith's

Make-A-Wish

2011-12-18T16:36:00.000-08:00

When Josh was in the hospital at the beginning of the month, we had a visitor drop in and tell us that Josh was being nominated for Make-A-Wish! How incredibly exciting! When she explained to Josh what Make-A-Wish is he was beaming! He was so excited and has been talking about it ever since that day. Well this past Saturday was his day to make his wish. It was awesome! Josh could hardly contain himself & bolted out of the car & into the Wishing Place. Upon arrival he was given a Light Saber...how did they know?!?
After they explained how the whole process works, he was taken to 4 areas of the Wishing Place where they asked him 4 questions, to determine his one true wish!

First, he was asked if he could be anyone in the whole wide world for a day, who would he be? His answer "A Storm Trooper, oh or Darth Vader!" Second, if he could meet anyone in the world, who would he meet? Again, "Darth Vader....and Anakin!" (are you picking up on a common theme yet?)

Then he was asked if he could have anything in the world, what would he want? He said, "I want a green light saber!!!"...He already has a red one & 2 blue ones, so naturally that would complete the set. And finally, they asked if he could go anywhere in the world, where would he go? As he stood facing a picture of a huge cruise ship (you can kind of see it in the picture above) he said, "On a boat."
Jon & I couldn't help but laugh at every answer he gave. It was just so cute & so Josh. They questioned him more a while later to see if they could get anything more out of him & at that point he said, "Oh yeah, I also want a gun!"

After determining what he wanted, he was presented a key to the magical wish room where he deposited his wish. It was cool! There was a light show & music playing once his wish was made...but the camera on my phone didn't take a very good picture of that, so just picture the magic in your mind.

Finally, we were all given special wishing coins to make our own wishes in the fountain. It was neat for the rest of the kids to be included! They all had a great time & I know they'll never forget this day. Before we left they had one last surprise for the kids...they were all allowed to choose a new set of jammies! They had a huge table of cozy pj's and the kids were all so excited to choose their own pair & within a minute of walking in the door after arriving home, all 4 of the kids were in their new jammies!

We feel so lucky to have Joshua chosen to make a wish. I can't help but get choked up every time I think about it. So many generous people make this possible & we are endlessly thankful to everyone.

Now we wait to be contacted & Joshua will be presented with his wish after the wish granters have some time to coordinate!

status update:

2011-12-16T17:21:00.000-08:00

I just flipped through the pictures on my phone & thought this was kinda cool...it's from his hospital stay 2 weeks ago. (He's home now.)

To quickly catch up, shortly after Joshua was released from the hospital he & the rest of the family (except for Jon) came down with a terrible stomach virus. I don't want to even think about it again...so lets just leave it at that. Awful. Needless to say it was hard on Josh and was a set back. But he's better this week & is nearly back to the old Josh. He's been a bit moody which usually means he's not feeling great, but he's headed in the right direction. Definitely the best week he's had this month.
I took him to the cardiologist on Wednesday & left feeling a little bummed. I was hoping to hear that his heart looked great & he's back on track, rather I heard that it'll likely take a few months to get him back where they'd like to see him. I guess I was a little in denial about his current condition....because obviously his heart isn't going to look great especially after vomiting & diarrhea for 8 days. But he is improving, so I'll take that.
Anyway, Joshua has a very special day in store for him tomorrow...I'll post on that soon!

Home

2011-12-02T11:25:00.000-08:00

As I mentioned before, Monday started out as a regular visit to the cardiologist.

But turned into this.....

Which really wasn't all that bad.

Joshua was admitted on Monday & released on Thursday. He was on a few IV meds & lost a lot of the fluid his body had been holding onto.

As far as hospital stays go, it was pretty short & only involved 3 pokes, which is pretty lucky for a heart kid spending 4 days in ICU. Since we were so close to home this time instead of UCSF he had a ton of visitors. Joshua always loves having visitors - so being close to home was nice! BUT we did miss that feeling of family at UCSF...we have become so close to the nurses and doctors there and we love them & miss them.

The whole experience overall was positive, because his state wasn't as critical as we are used to during hospitalizations. So he had a lot of fun. Don't get me wrong, he definitely had his share of difficult moments & sadness. But they were just moments.

We had many family members & friends help out in various ways. You realize at times like this how truly blessed you are to have them in your life. We are so grateful for all of you.

Joshua was released yesterday & now we are home getting used to all of the new meds & relaxing. Trying to catch up on sleep. Even though the stay was pretty low key, not much sleeping ever takes place in a hospital room. So our plan for the next few days...sleep!

Not the news we expected

2011-11-29T15:11:00.000-08:00

Last week I posted that Joshua was scheduled to see his cardiologist yesterday due to his recent blueness and general sluggishness. I assumed it was the cold weather and it was just taking him some time to adjust. That was wishful thinking. Josh was admitted to the ICU after his appointment due to his poor heart function, fluid around the lungs and an enlarged liver.
He's on some powerful meds to "tune him up" and hopefully after a few days the situation will improve. Thankfully he's in good spirits. There are always difficult moments in ICU, but we are staying positive and that goes a long way.
Your prayers are much appreciated!

This & that.....

2011-11-25T13:04:00.000-08:00

Last week Joshua was invited to one of his very best buddy's birthday party. I was planning to drop him off & then head home, but seeing the joy on his face, I had to stay and watch! It was a kickball party...best party idea ever! It was right up Joshua's alley. Lots of fun!

I have had so much fun this school year having a few hours a week with just the boys. It gets pretty crazy most days, these boys like to play hard! It's really a blessing to have this time together, I look forward to it. But we also look forward to picking the girls up each day because they are so much fun to be with & good helpers too!

A couple of weeks ago we decided to go check out the local fish hatchery. When I ran cross country in college my coach would take us to the fish hatchery each year before the state meet and we would watch the fish work so hard to swim up the ladder. It was quite a sight & I knew the kids would love it.

Abby is learning about Salmon in school so she taught us more than all of the informative signs. It was a fun day.

Joshua is still loving preschool & I am so glad we decided to put him in this year. I don't think we could have found a better teacher for Joshua. She really understands him.

I'll be taking Joshua to the cardiologist on Monday. Can you believe he hasn't been since surgery in March?!? What in the world? That's a good thing though. He's been doing very well. The cold whether brings out his blueness again, and he seemed a bit sluggish for a couple weeks. I think his body was just adjusting to the colder temperatures. He seems more like himself the past few days, so we're glad to see that.

Well, that about sums it up. I'll be sure to post a progress report on Monday after his appointment. I don't expect any surprises, I'm thinking we'll probably get the "all clear, see ya in 9 months!"

Happy Halloween!

2011-11-01T14:18:00.000-07:00

lookin' good

2011-10-18T14:09:00.000-07:00

Birthday celebration!

2011-09-20T11:24:00.000-07:00

Joshua had a great Birthday this year. I took him & the kids to Chuck E. Cheese. He loves it there. We kept the celebrating very simple & had I thrown a lavish party, I'm not sure it would have been any more fun. I'm realizing that maybe less is more. I certainly didn't feel stressed out or worried that things would be just right. So nice to just enjoy the day & have fun with the kids!

He got a rubber band riffle (although no ammo) & he LOVED it! After opening his gifts he nearly forgot that he hadn't gotten the lightsaber he'd been asking me to get him for months. He quietly said, "maybe next time I'll get a lightsaber." and then returned to playing.
He never mentioned it again. That night Grandma stopped by briefly because he had one last gift for the birthday boy. Wouldn't you know, it was the lightsaber! Secretly, I knew along she was getting the lightsaber...but for him, it was the best surprise in the world! The perfect ending to a perfect day!
It was a very happy birthday!

Happy 4th Birthday!

2011-09-17T13:06:00.000-07:00

brudders...

2011-09-09T12:33:00.000-07:00

Having 2 year old & 3 year old boys is always exciting. There's never a dull moment, as they say.

Josh always has something new to teach Sam. Sam is eager to learn & help come up with new ideas.

We love our little knuckle heads!

Gettin' schooled...

2011-08-18T21:07:00.000-07:00

Preschool started this week & it was everything Josh hoped for and more! He's come home beaming each day & keeps saying "Hey mom, lets talk about preschool!". He doesn't have a lot of details to offer but he keeps on talking about Ms. Cathy's knives. For the life of me I can't figure out what he's talking about. It's pretty funny though. I'll have to ask her about it next time I see her.

Anyway, I'm so proud of my little boy & how far he's come. There was a time when we weren't sure we'd see this day. So that's made this experience extra special!

one more week

2011-08-08T14:39:00.000-07:00

I can hardly believe that in a week we'll be zipping up his tiny backpack and sending Josh out the door to preschool. I have a lot of emotions, I'm a little sad that he's so old, and I hate to see summer come to an end, but on the other hand I'm so proud of Joshua. He's come a long way & he is 100% ready for this experience! I'm so glad that he has the Fontan behind him going into this school year - because I doubt he would have been able to return to school given his emotional state following the surgery. Exciting times ahead!

beach bums

2011-08-01T17:14:00.000-07:00

In just over 2 weeks my big boy will start preschool. Preschool! Not sure where the time went. Josh is SO excited & has been asking for about 3 months, "Is summer over tomorrow?"...because he wants to start preschool now!
Me on the other hand, well I wish summer never had to end. But I know it's going to be a great year for Joshua...I can feel it!

Summer fun!

2011-07-18T15:57:00.000-07:00

My blogging habits haven't improved at all, maybe I'm getting even worse. But the good news is we are busy having a lot of fun this summer...so much so that I'm hardly online.

I decided at the beginning of the summer that we were going to have an active summer. Everyday we do at least one thing that gets the kids moving. Mostly that means riding bikes to the park or swimming, and we've done a little hiking too. I think we've been to the park nearly every weekday this summer and we've gotten in several swims too. It's been great!

Josh is doing so well. He keeps right up with everyone. He hasn't been napping for who knows how long and not long after surgery re-potty trained (he had to wear diapers briefly because the Lasix was making him pee SO much). His behavior has also been improving lately. He's definitely acting more like his silly old self again. The further out from surgery the happier he's been. He has done great going back to his class at church, which was a challenge after surgery, but I think now he's doing better than ever on that front. It helps that he loves his teacher. She couldn't be any sweeter, he's so lucky to have her!

Josh has been gaining weight more easily for the first time in his life & he's starting to look like a big kid more than a toddler these days.

Life is good. Life is ordinary! Can't complain about that!

As you can see in this picture, he gets blue when he's cold...but his coloring is much better than before!

Hope everyone out there is well...sorry I have been so bad about keeping in contact with so many of you. I'll be better after summer. Promise. :)

check up

2011-06-03T00:27:00.000-07:00

Wow. It's been a l-o-n-g time since I've posted anything at all. But that's a good thing in this case. Joshua is doing so well with his new & improved heart that I forget there's anything wrong inside that chest of his at all. His attitude, well that's another story. The emotional aspect of recovery has been a bumpy road, but we count our blessings that his heart is doing so well.
Joshua had a check up today & everything looked absolutely perfect! His sats - - - 96!!! That's normal, even for a healthy person! Pretty awesome.

I wasn't expecting such a huge improvement after the Fontan. I suppose I didn't want to be let down if the results weren't what I was hoping for. But now that he's recovered & life is back to normal (sans the good attitude) I can honestly say I didn't see it coming! The boy runs & doesn't lose his breath. He can keep up with the other kids, no problem...finally! He notices it too & says that he feels "super strong" now.
As for the emotional aspect of this journey he's been on, it's been tough. Joshua used to be really happy all of the time, prior to surgery. But surgery & recovery were very difficult for Joshua & hard to understand. He's 3 years old for heavens sake! The child life specialist at UCSF told us that after all he'd been through we should expect that he'd need to release all of that pent up emotion. As I mentioned, Joshua used to be so happy & so silly, but that seems to be a distant memory these days. He has done a lot of crying, he seems impossible to please & has been angry. I have to remind myself what he's been through, because it's very difficult to get the brunt of it. He needs patience, compassion & a little lenience, however his sunburn side is out in full force and when you give him an inch of lenience, he takes a mile. So it's been a tricky balance for us.
About 3 weeks ago Jon took Joshua on a camp out. Just the two of them. They spent some good quality one on one time together. Joshua came back beaming & telling me story after story of their adventure. It was so refreshing to see him light up, the way he used to. Since that camping trip I feel like we are seeing pieces of our old Joshua each day. I was feeling almost hopeless about a month ago & very overwhelmed. As I sit here typing this I can say that I'm now hopeful that time will heal these emotional wounds & our silly goose will be back for good. We've sure missed his goofy laugh & his mischievous ways...but whether he likes it or not, he can't help but find trouble with his little side kick Sammy. I imagine next month I'll be posting about some sort of crazy plan my boys hatched up & have forgotten this hurdle we are trying to get behind us.
Anyway, life is good. Despite this trial we are SO happy knowing that Joshua's heart is doing so well & that he can play all day & not lose his breath any more!

j o s h

2011-05-03T13:49:00.000-07:00

He did it all alone for the first time! Yay!!! Good job, my lefty!

a little time away...

2011-04-25T22:50:00.000-07:00

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

2011-04-20T13:53:00.000-07:00

Big sisters pretty much know everything. Pretty much.

A new man

2011-04-15T09:00:00.000-07:00

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...

2011-04-05T09:33:00.000-07:00

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...

2011-03-28T22:56:00.000-07:00

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'...

2011-03-17T11:45:00.000-07:00

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!

2011-03-15T10:19:00.001-07:00

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

Post-op Day 9

2011-03-13T22:18:00.000-07:00

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

2011-03-12T21:21:00.000-08:00

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

2011-03-11T16:41:00.000-08:00

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

2011-03-10T22:08:00.000-08:00

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

2011-03-09T22:36:00.000-08:00

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

2011-03-08T19:22:00.000-08:00

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

2011-03-07T19:42:00.000-08:00

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

2011-03-07T09:28:00.000-08:00

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

2011-03-05T11:51:00.000-08:00

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

2011-03-04T17:55:00.000-08:00

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)

2011-03-04T12:03:00.000-08:00

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

2011-03-04T09:16:00.000-08:00

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

2011-03-03T17:55:00.000-08:00

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...

2011-02-28T18:59:00.000-08:00

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

2011-02-23T12:28:00.000-08:00

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?

2011-02-15T14:41:00.000-08:00

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!

2011-02-14T16:38:00.000-08:00

3 year Glenniversary - CHD week

2011-02-11T00:00:00.000-08:00

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

2011-02-10T13:11:00.000-08:00

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

2011-02-08T09:12:00.000-08:00

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

2011-02-07T10:39:00.000-08:00

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...

2011-02-04T12:03:00.000-08:00

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...

2011-02-01T14:16:00.000-08:00

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

2011-01-20T13:06:00.000-08:00

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

2011-01-14T10:40:00.000-08:00

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!

2011-01-08T14:33:00.000-08:00

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....

2011-01-07T20:23:00.001-08:00

I'll post all about it tomorrow!

Today is the day...

2011-01-07T00:00:00.000-08:00

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...

2011-01-03T21:09:00.000-08:00

Maybe his proudest moment!!!

(he had help:)

Sweetheart!

2010-12-30T16:09:00.000-08:00

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

Congrats Grad!

2010-12-26T21:47:00.000-08:00

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

2010-12-21T16:19:00.000-08:00

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,

2010-12-13T13:23:00.000-08:00

You don't scare me one bit!

love,

Joshua

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

family picture...not quite!

2010-12-04T19:13:00.000-08:00

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

2010-11-12T14:53:00.000-08:00

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!

2010-10-29T21:43:00.000-07:00

Love,

Batman & Robin

Meeting Paul...

2010-10-21T22:36:00.000-07:00

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

2010-10-18T22:40:00.000-07:00

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

2010-10-08T22:37:00.000-07:00

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.

An update - weigh in-

2010-10-06T23:06:00.000-07:00

Remember when I posted about Joshua's weight gain dilemma a couple of weeks ago? Well, I am happy to say, we've put your tips to good use! Joshua has been eating, eating, eating...every bite, and every sip, is packed with calories!
When I posted in desperation, Joshua weighed 27lbs 8oz. I have been conscious of everything I feed him and I weigh him daily. He now weighs, drum roll, please...29lbs 1.5oz!!! He has gained nearly 2lbs!!! I am so excited & feel like we are going to hit the 30lb mark by the end of the month!
I am so grateful for all of the great suggestions that were given. I don't feel overwhelmed by the task of growing him anymore. He's going to hit 35lbs like he needs to. I just need to stay the course.
In other Joshua news, he needed to have blood work done this week. I didn't post about it because I was feeling sick about having to do it. Blood draws & IVs are the worst, in case you didn't know (but if you're reading this, you probably know).
It was tough to watch, but it went as well as it could. Joshua knew what was going on when we entered the lab & didn't put up a fight. I was very surprised that he didn't resist. He gave the man his arm & when the needle entered (on the first poke, phew) he buried his head in my chest & cried. He told me, "momma it hurts me." That's the worst. But he stopped crying as soon as it was over. It really only lasted for about 8 seconds total. I am very grateful that it went so very smoothly. But even 8 seconds sucks when it's your baby suffering. Anyway, now it's over with & he wasn't traumatized.
His labs came back looking almost exactly as they did last year. Everything within the normal range, except for the red blood cell count, due to his low oxygen levels. Actually, that figure had slightly improved from last year's reading. Good news!
We are about 2 weeks off from his next major appointment. I am feeling some anxiety. I am really not a huge worrier when it comes to Joshua. I definitely worry, but I never freak myself out with awful thoughts. I take his journey one day at a time. I don't want to spend my time worrying when he's healthy because heaven forbid he become seriously ill, I would regret that I didn't simply enjoy the time we had when he was healthy.
With that said, Joshua just doesn't look so good lately. He is very blue & very winded when he plays. He plays very hard. When he's just hanging out, he looks just fine, but he isn't one for "just hanging out" and the result is a blue, winded kid. And so I'm worried.
We should get a game plan for the Fontan at the appointment. That may mean we are put on the books right away, or it may mean we are told we aiming for Spring. Either way, I will feel better after talking with Dr. Rivera, he's so good at his job, we trust him, we love him.
I will keep you posted when we find out more...thanks again for the food suggestions, they are certainly working:)

Sweetness

2010-10-04T22:58:00.000-07:00

Tonight as I was saying goodnight to the girls, I heard Joshua repeatedly calling my name. He seemed excited, so I was curious to learn why he needed me so badly. He told me "I takeded care of Sammy for you mom!"...Some how, he got Sammy to sleep, right on the family room floor! About 10 minutes later, I found this...

So sweet.

Shhhhhh!

2010-09-27T16:01:00.000-07:00

I took the kids to pick up some new speakers for my computer at an electronics store. It was the type of store where they inspect your receipt as you leave, to make sure you got everything you purchased (really they are making sure your not stealing, but it sounds nicer when they pretend like they are being helpful). As I pushed our shopping cart to the exit, in attempt to distract Josh from the gumball machines, I asked Josh if he would show the man waiting at the door our receipt. Then as I stopped the cart at the aforementioned man, Joshua looked at me and asked, "You mean this big fat guy here, mom?"
Ugh.
Josh is lucky he's so cute.

The BIG day!

2010-09-20T14:13:00.000-07:00

Joshua just celebrated his Birthday & he turned...

Wait a minute...that's not quite right! Lets try that again...

That's better!
Joshua turned 3 on September 17th, and as it turns out, my boy is currently obsessed with baseball! He absolutely loves The Sandlot movie & as a result dreams of nothing but playing ball! It wasn't hard shopping...I knew exactly what to get...

In the space of 5 seconds all his dreams came true! I wish everyone were as easy to please!

After opening some of his gifts, we headed to his party!

(He wears his new "Benny hat" everywhere. I think he's pretty cute in it!)

We kept the party simple. We invited a few buddies to come play baseball at the park to celebrate...

His girlfriends mostly socialized, while the guys played...

I think everyone had a good time!

Especially when it was time for the pinata!

This thing was nearly impossible to bust open...but after a good, long beating it finally released the goods!

When all was said & done, it was a good day!

Happy Birthday little buddy! Your third year is sure to be amazing!

3 in the morning

2010-09-16T23:58:00.000-07:00

When this baby of mine wakes up tomorrow morning...

he's gonna be 3 years old! I am so excited!

(I just finished filling the pinata & it weighs more than him!!!)

calling all heart moms! (and anyone else who is willing to help)

2010-09-10T23:37:00.000-07:00

This boy of mine is pretty much skin & bones. When I weighed him today he weighed a whopping 27lbs 8 oz. Yes, this means he's actually lost a little weight. At one point he was pushing 29lbs.

Lately, I've had his weight on my mind & I've been weighing him weekly on my baby scale. He just isn't growing. The boy eats like it's his job, but it doesn't stick. His little heart is working so hard & using up all those calories.

He needs to gain weight in order to have the Fontan (his next surgery). He's showing signs that he's ready for surgery, however he hasn't hit the magical weight of 35lbs. Dr. Rivera thinks that if Joshua hit 32lbs we'd get the green light. So naturally, that's my goal, the big 3-2!

Now here is where you come in...I need some suggestions! I know just about every heart mom has fought this battle. What do you feed your kid? I try to feed him healthy foods -but- I'm not a total health nut. In other words, give me any suggestions, whether it's healthy or not. I'd like to hear what you have to say! Joshua is not a picky eater at all, so your suggestions needn't be toddler friendly. But if they are toddler friendly, that's just great! Please, help!!!!

(by the way, did you know Joshua is potty trained? It was a very long process & he still loves the comfort of his diaper (which coincidentally I like)...but he's been doing his business on the potty for a few weeks straight:)

brotherly love

2010-09-07T23:30:00.000-07:00

These little monkeys love to wrestle each other. All in good fun, but I'm not gonna lie, it does get ugly from time to time! I'm so glad they have each other to team up with, learn from, get in to mischief, etc. I love watching them & listening to their giggles!

I haven't done a lot of writing on this blog lately, but I've just been extra busy and honestly lazy too. I've been busy with the start of a new school year, new soccer teams and so on. And summer was a lazy time for us...we didn't have any commitments, just did as we pleased all summer. It was awesome.

Joshua has a full day at the cardiologist coming up next month, but part of me wants it to be sooner. He is so winded these days. He still does everything he used to, he just does it short of breath. It's so sad hearing a small boy out of breath. It isn't normal, but it's HLHS. In that regard it's normal I suppose. But I don't like it.

I also don't like the fact that he's 2 years old and I should be watching him grow bigger, faster and stronger each day. Instead, he's hasn't gained any weight in 9 months, and he's slowly growing weaker. But, again that's HLHS.

But on the other hand, what a wonderful time to be on the earth...he was born in an age where his condition can be a livable condition. We thank our Heavenly Father daily for that. And while the reality of HLHS isn't great, Joshua has thrived with this condition & surprised everyone. He'll continue to do so, I know it!

Anyway, back to the original purpose of this post...I am so lucky to have these little guys in my life! I Love them a lot.

my busy bee...

2010-08-29T01:07:00.000-07:00

I love him. That's all.

tahoe...

2010-08-16T11:10:00.000-07:00

We just got back from spending the week at Lake Tahoe, we had the best time!!! You wouldn't know it by his poker face, but Josh had the time of his life. It makes me laugh that he is 'too cool for school' at the tender age of 2...but that's my boy. Enjoy the pictures below!

Here he is riding Patty...Sam just joined him for a picture...Josh was the cowboy who rode this steed!

Riding the gondola to the top of Northstar, again too cool for school (trying his hardest not to show his excitement):

Singing primary songs on the drive (way too cool to let me document this):

But give him a little ice cream & he can't fight the feeling anymore:

The bath was pretty fun too:

Joshua also went Kayaking, which he loved:

Of course he spent hours digging in the sand:

And finally he played lots of football (we didn't bring the football, but where there's a will -or a pine cone- there's a way):

I was a little nervous about the elevation, but he did just fine. Every time I asked how he was feeling he said "I feeling happy!" I am glad we did as Dr. Rivera suggested, we stuck with our plans and had a great time! Not a single regret, just a lot of good memories!

good enough to eat!

2010-07-14T18:41:00.000-07:00

Now you see it...

& now you don't!

monkey business...

2010-07-13T21:26:00.000-07:00

boy vs. wild

2010-07-08T13:54:00.000-07:00

Lately our family has started watching Man vs. Wild. We think it's entertaining, and a little shocking too. I've been thinking maybe we shouldn't watch it with Joshua because he's proudly brought me numerous live bugs since first watching the show.

Bugs are one thing, but today when I was watering out plants, I saw a snake in some bushes & ran in the house. I quickly dialed Jon & pleaded with him to come home from work to kill it (I hate snakes). Josh caught wind of what was going on & he mumbled aloud, "I'm gonna eat it"...then he headed out back. It took everything in me to follow him with my camera. I really hate snakes.

Lucky for us, he couldn't find that sneaky snake. No snake brunch. Phew!

the lollipop kids...

2010-06-28T14:08:00.000-07:00

Josh is a lucky little kid! On hot summer days, he cools off at the local pool. But what's even better is the company who joined us on this hot day:

Originally, we had plans to meet our buddies at a park, but wouldn't you know, it was a scorcher out today...plan B (the pool) wasn't so bad though!!!

Joshua and Casey have more in common than just the scars on their chests; they also like to make the same face in pictures:

We love having a heart buddy that lives fairly close to us! Especially one who Joshua looks up to! Thanks for hanging out with us...see ya again soon!

I spy

2010-06-21T16:16:00.000-07:00

We had a little visitor last week, a tiny little visitor.

this means WAR!

2010-06-15T15:24:00.000-07:00

While the girls were occupied, the boys decided they were going to "balloon da girls up!" So like a good mom, I armed my boys with water ballons.

Told them how we needed to go about our sneak attack...

Finally, we went to war! Only we didn't expect the girls to be on their 'A' game. They pretty much clobbered us!

After our war ended, we played a little water balloon baseball...

It was wet and wild!

We topped off the afternoon with some hotdogs...

All in a days work!

hide & don't seek

2010-06-11T16:37:00.000-07:00

I've been hiding Abby's bag of play make up from Josh all day. No matter how high, or sneaky the hiding place, he seems to find it. I caught him just in the nick of time, 2 times, as he was twisting the lid off the nail polish. But, you can see who won this battle today. One day he'll look back at these pictures & wish I had won.

Josh the builder

2010-06-07T08:33:00.000-07:00

Joshua spent Saturday morning working on the backyard with dad. They are nearly done & it's looking great! Jon is lucky to have a little helper!

Little helper #2 was sentenced to the house because he had just been bathed. Poor little helper #2 :(

this boy loves anyone....

2010-06-02T20:49:00.000-07:00

...who is willing to hold his hand. As a bonus, this "anyone" happens to be his cuddle-bug, baby cousin, who also loves his pacifier. Soul mates.

Boys only!

2010-05-17T09:20:00.000-07:00

Joshua was right when he decided he needed to bring his wiffle ball bat on the camp out! Jon said they played ball for quite a while. Joshua squatted down behind one of the bigger boys apparently playing outfield (if you ask me those older boys look legit)! So cute.

Anyway, when they got home Joshua (who didn't want to come home at all) told me he "made a fire & played baseball & fisheded & da munster!" Jon said on Friday night Josh was scared of a monster. I have never heard him mention monsters...so I imagine it was the influence of all those boys, minus their mothers!

All in all, it was a great trip & they are both ready to go camping again, as soon as the chance arises.

He really loves the outdoors!

the cutest picture

2010-05-15T17:21:00.000-07:00

ever!

Father Son Camp Out...

2010-05-15T07:00:00.000-07:00

Well it's that time of year again! Joshua couldn't have been more giddy. After I packed his clothes yesterday morning he searched high & low for the perfect toys to bring along. He'd gather a toy, take a good hard look at it & say "I think I need to bring dis!"...or "not dis one." It was awfully cute! This picture is a pile of some of the necessities.

I can't wait to get my hands on the camera when they get home! I'd say there is about a 50/50 chance of finding a blank disk, but I have faith in Jon that he'll produce the goods (fingers crossed)!

a true cowboy...

2010-05-12T14:32:00.000-07:00

The other afternoon we had a hail storm & the girls threw on their boots & ran outside with cups to collect the pebbles of hail. Joshua, not owning any boots, wanted to join in the fun. Rather than put on his slip-ons, he ran upstairs & found this silly pair of baby slippers (that happen to look like cowboy boots - key word - boots). No, they didn't fit & yes, his feet were cold & wet when he came in...but he was happy! Little boys, I tell ya!

i wuv you momma!

2010-05-10T16:47:00.000-07:00

I heard that a lot last week. Joshua also sang "Happy Birfday to mom" countless times. He was a little confused by Mother's Day... but he sure meant well!

My boys couldn't be any more different than my girls, but I love them all the same. Joshua in his own sweet way made me feel like the best mom in the world...I assure you I am far from it, but he's proof that I must be doing something right. Oh how I wuv being his momma!

artisitc little...

2010-05-06T10:41:00.000-07:00

athlete in training

2010-04-30T12:56:00.000-07:00

Earlier in the week, some girls from our church were running in a track meet, so I took the kids to watch the fun. Man how it brought back memories of the glory days! It was pretty wild going to the meet because as soon as I walked into the stadium I heard the voice of my old coach, yelling to an athlete to get to their event asap! It sent a shiver down my spine, as if I were about to miss my event. It brought me right back to my teen years in a split second!
I was really excited to watch the girls from church compete, but I was also excited to show my kids the sport that was my entire existence for several years. It was so fun watching my kids cheer people on & get into the spirit of track. Joshua was really funny cheering on one of the girls running the 2 mile... every time she'd pass he'd yell something like "Let's go Shana, you're a good girl!" or "You should do it Shana!"
The kids wanted to know all about the hurdles, the jumping events & especially the pole vault (one of my favorite events in high school & college). They were fascinated by it, the way I was when I was a kid. I remember watching the pole vaulters at my older brother & sister's track meets as a girl & deciding I'd be a pole vaulter some day.
Joshua came to the same conclusion. He said to me he wants to do "the stick on the trampoline" - that's 2 year old talk for pole vaulting. I have no doubt that if he wants to be a pole vaulter, then he'll find a way to be a pole vaulter. He's just that kind of person. I just hope he doesn't take an interest in some thing like boxing, cause that's not happening!

(The photos are obviously unrelated...just cute that he made his own tee ball set up)

playing hard

2010-04-14T13:35:00.000-07:00

It's fun to watch Joshua grow into his role as "big brother"...a role that he loves! Lately he and Sam play together really well. Sam is very mobile & follows Joshua around all day...it's funny to watch Sam studying to be like Josh.

After a long day of playing, Joshua often doesn't even make it to bed before falling asleep.

And you know yu're tired when you can sleep in this position:

6 month - all clear

2010-04-06T21:15:00.000-07:00

Our little guy was due for his 6 month cardiology appointment today and it went extremely well! Josh is approaching his 3rd surgery (the Fontan) which will improve the oxygen levels in his blood, improving his overall health. Typically, a child with Joshua's heart will experience a slow drop in their oxygen levels (their sats), and their heart struggles more as the Fontan approaches.

So that's where Johsua's at - awaiting the Fontan. Only for some reason Joshua's oxygen levels are higher than I've ever seen them before, his heart function is great, his blood pressure is normal, his previously leaky & repaired tricuspid valve isn't leaking at all, and he isn't even using his pacemaker! Our constant prayers are being answered.

We feel incredibly blessed to have gotten such a good report today. I assumed we'd be looking at a calendar deciding when we would head to UCSF for surgery. At the very least I figured he was due for a heart cath. We got the "All clear, see ya in 6 months ... NO RESTRICTIONS!"

Dr. Rivera always checks to make sure I'm not restricting Joshua in any way. If you know me, you know I let him run wild, so I always laugh when Dr. Rivera gets to that part of the visit.

Also noteworthy, Joshua behaved amazingly well during the appointment. Not a tear shed, and he didn't want to leave! Josh really loves Dr. Rivera & that sure helps! I remember when he was younger it was so hard taking him to these appointments because he feared the doctor's office so much. I am happy to report that he's out grown his fear & though his next surgery will probably have him fearful once again, it is certainly nice that he's at an age where he can be reasoned with.

I've decided I'm gonna stop with my "typical HLHS" thinking from now on, because Joshua has proven to me that I should dream bigger than "typical"!

chatter

2010-04-01T11:19:00.000-07:00

We just got back from our spring break vacation & had an awesome time! Josh made us laugh quite a bit on this trip with his antics. He's recently started referring to people (and things alike) as his "best friend." Some of his "best friends" on our trip included, a Toys-R-Us ad, a bottle of ranch dressing, a shovel, his little "bruder" Sam, and me & Jon too. I used to feel special when he'd call me his best friend, until he started using the term so loosely...oh well.

He sure knows how to make us laugh! Like this morning when Callie took his toy, he gabbed my cell phone & this is the conversation he had with the "police"...

"Hi police. You can come take Callie to jail, cause she stole my toy. Danks police, bye!"

Good thing I haven't taught him to dial 911 yet.

naughty & nice

2010-03-11T22:42:00.000-08:00

This week has been kind of busy for me for a few reasons. First, because I'm helping throw a baby shower on Saturday, which will be lots of fun! And second, I am a leader of the Young Women's group at church & we are taking the girls on an over night trip this weekend (I'm coming home late Friday night, can't stay over night with Sammy on my hip). I've spent the week preparing for both of these events. Today was the day I did some baking for the shower, I'm making a polka-dot cake. Simple enough...that is, until a certain 2 year old conveniently found his way to the counter top & poked each polka-dot with his grubby little finger! Ugh!!!!

That was the naughty, now on to the nice....because after all, he is a nice kid.

The other day we were hanging out with Josh's aunt Carrie & he asked her to take him to Old Navy. She laughed & asked him why he wanted to go to Old Navy. He told her in his sweet little raspy voice "So I can buy you a ball!"
What a sweet gesture from a 2 year old boy!

(To be fair, I was able to salvage about 8 of my nearly 100 dots. He didn't ruin every one of them.)

new strategy...

2010-03-04T10:33:00.000-08:00

Jon & I have been working hard to break Josh of his "repeat mode" where he'll say the same thing 100 times in a row. For instance when he wants me to get him his pacifier he'll say, "I want my bo bo, I want my bo bo, I want my bo bo....." until I'm ready to go coo coo! Pretty typical for a 2 year old (at least that's what I tell myself).

Well it seems our efforts have paid off because recently rather than his typical begging, he's resorted to a new strategy. Now he'll say "Mom, go get my bo bo. I trust you." or "Mom get me chicken nuggets, you're my best friend." I have to admit, it's hard to refuse such requests (even though in reality, he's just out smarted me to get what he wants ASAP)!

He's only 2...should I be worried?

don't ask...

2010-03-02T23:54:00.000-08:00

I know some of you are asking yourself how I had time to grab my camera at a moment like this. The truth is he was hanging out up there as I was cooking dinner - although I didn't realize it until I heard him saying something about "walking on the roof." That caught my attention & I found him scaling the banister. Moments after taking this picture he said, "I fly up off roof now!" Not so fast Josh....that diaper doesn't give you super powers!

say what?!

2010-02-23T13:22:00.000-08:00

Last night for family night we talked about showing each other love, kindness & being a happy family. I told the kids that this week I wanted each of them to go out of their way daily to do something nice for their siblings. I also told them that if they did or said something not nice, then they needed to pay the sibling they slighted 2 compliments (I got this idea from one of the girls I teach at church). Later in the evening Josh playfully kicked Abby. She said to him, "Joshie...you gotta say 2 nice things to me for that!"

He thought about it for a second, got a big smile on his face & said, "Okay...I like to toot. And I like to kick you!"

This is going to be an interesting week!

a big scare

2010-02-18T13:54:00.000-08:00

While this is Joshie's blog all about his heart, Sammy has earned some air time on the heart blog. You see Sammy turned 7 months this week, but it was overshadowed by some serious craziness. On Monday morning Sam woke up feeling sick. I mean really sick...high fever, vomiting, sleepiness, only wanting to be held by me - even while sleeping, did I mention the horrible cough??? It was pretty bad. Monday was a holiday so our doctor's office was closed. It was bad enough that I decided to take him into the urgent care clinic. At the clinic he was seen by a resident who didn't feel good about sending us home until the doctor took a second look at him. Immediately the doctor said "This is obviously an RSV baby...check his sats." His sats were 96 - not alarming, but upon listening to his lungs she decided that he needed a chest x-ray. This is where the story takes a turn for the worse. After the chest x-ray results came in, both the doctor and the resident walked in with looks of pity. They looked at me and said "Well, the good news is the lungs look clear...but it appears his heart is enlarged."
Say what???? They said that it may just be the position Sam was sitting when they took the x-ray. I didn't panic, but asked if it was realistic to think it was just his position, or if the reality is that his heart is enlarged. The response was "anything is possible." The doctor said she called the pediatric radiologist to take a look at the x-ray. She told me that she'd call me later in the evening & let me know what he thought.
Then they swabbed Sam's nose to test for RSV because we were there to figure out what was currently the matter. After the swab we were on our way home.
As soon as I called Jon I started crying because saying the words "Sam has an enlarged heart" made it seem terrifyingly real. I called my family & Molly did her best to reassure me it'd be ok. Poor Molly always seems field the phone calls when I'm at my lowest point (she must love that). She convinced me to call Dr. Rivera. I called him, he had just gotten home from skiing, but was happy to look into it (he had access to the x-ray from home), and then call me back later. In the mean time the doctor who saw Sam earlier called to check on us. She said that the radiologist took a look at the x-ray and felt that his heart was indeed enlarged. Moments later Dr. Rivera called me back & disagreed. He told me to bring Sam in first thing the next morning for an echo just to be sure.
The next morning Dr. Rivera met us at his office, as soon as the doors opened - on his day off no less. As he watched the echo he knew right away that the heart wasn't enlarged - phew!
He & the echo tech looked around a bit more at the heart. Then Dr. Rivera told me that Sam actually has a hole in his heart, but it's relatively small. Not a huge scare, but will require follow up echos. It is an ASD- a hole between the upper two chambers. Never in a million years did I expect to go through any of this with Sam when I brought him into urgent care on Monday. It was quite the roller coaster. Have I mentioned how much I hate roller coasters?
Well you'd think that was enough for Sam to go through...no, no there's more. They confirmed he has RSV, which has been a horrible experience, fever, cough, miserable. AND he has a stomach virus, which has caused diarrhea & non-stop vomit (today is day 4). AND he has an ear infection, pain, sadness, more fever.

Okay, lets go over this again....just to be sure you got all of that:
1. RSV
2. Stomach virus
3. Ear infection
4. A hole in the heart (talk about adding insult to injury)

You could say this has been a long week. And it's been an awfully long weekend for Abby who hasn't been to school all week because she's also sick. So if you happen to see us any time soon....run the other way! Because I wouldn't wish this upon anyone.
But on the bright side, the weather is beautiful! I'm clinging to that right now, clinging.

Happy Heart Day!!! {CHD week}

2010-02-14T00:00:00.000-08:00

As I look back on the stories I shared this week, I realize that I did a lot of sharing about the hospital aspect of having a CHD. I think that's because those are the times when it really feels like Joshua has a serious heart defect. The truth is, day to day our lives are very normal. I give Josh his daily medication, change his clothes and see his scar, yet I tend to forget about the disease he lives with. He leads a very full, happy life. I hear time and time again "I had no idea Joshua had anything wrong with him!" This is like music to my ears, because if people see no signs of his CHD, then he must be doing pretty well, right?
I often say, if I only knew back at the start that Joshua would live such a normal life, I would have saved myself tremendous stress, and worry...and probably a lot of tears. But the stress,worry & tears are an inevitable part of the process. The fact is, his journey is far from over, but I find joy in knowing that he's been grated a normal life, to this point. We truly relish this time in our lives.
As we say farewell to another Congenital Heart Defect awareness week, I urge you to donate blood, become an organ donor, spread the word about the prevalance of CHD's, donate to CHD related research, do whatever it is you can. Thank you for reading my blog this week. It's my way of letting people know what it's like having a child with a CHD (for our family anyway), and therefore spreading the word.... and that's what it's all about!

Happy Valentine's day!

Brothers & sisters {CHD week}

2010-02-13T00:03:00.000-08:00

By far the best days of joshua's hospitalizations were these:

Joshua is a lucky boy...a boy who has 2 big sisters! These girls love him to pieces & he loves them right back.

When Joshua had his surgeries the girls were too young to really understand the extent of his illness. It was fine all the same because there was no need for them to worry. But regardless I think seeing the brother they love in this situation has taught them true compassion. They are very sensitive little girls and I think it's due to the fact that they have experienced this journey right along side Joshua. Their visits lifted his spirits like no one else could have. Now if only I can find a way to teach them to appreciate each other on a daily basis...