One week ago

Wow, it's only been a week.  The longest and shortest ever it seems.  7 days ago was one of the most stressful days of my life, and that first night was incredibly hard.  Every day is better and better.  If I didn't know that Joshua had surgery, I probably would never guess.  He is back to his always charming self, and wants to spend his whole day gaming.  He is still a bit limited in the things he can do.  He really can't run around like a crazy boy, he can't go swimming and I have to force him to read.  But I am back to limiting game time a bit.  Next Friday we see the surgeon for his follow up appointment.  He will have a few limitations for about six months, until the breastplate is fully healed.  No lifting a heavy backpack (going to have to figure that out), and no contact sports or activities where there could be impact to his chest (like bike riding). Other than that, he can do normal stuff.  Thank you all for everything.  The prayers, positive energy, get well cards, evening meals and most if all, giving us the amazing gift of coming home to a newly cleaned house.  We appreciate each and every one if you more than words can express.    

Home

We are home!!  Josh is having some game time.  The one hour rule is kind of out the window for a little bit.  After all of this, we are pretty much allowing most things!

Discharge day!

The talk is that we are coming home today.  Strange thinking that he had open heart surgery less than 72 hours ago. All but that first day have been smooth, and medically the first day went great, it was just very emotional for us.  Kids are definitely resilient!  He is not back to 100% obviously. We still have work to do to make sure he continues to recover and is back to his crazy, goofy, adorable self soon. Thanks to everyone for the prayers, positive energy, friendship and kind words.  It does take a village! I can't imagine being alone during all of this.  I have amazing family and friends.   Thank you from the bottom of our hearts. 

Sir Koff A-lot

This is the bear they give cardiac patients to put pressure on the chest while he moves or coughs. 

Good night

Joshua slept all night, even with the nurse coming in 4 times to check his blood pressure.  Probably the first good night since we got here (even though that's only been 2 nights!).  Today, I think the plan is to get him out of bed and walking.  He really hasn't complained of any pain. I am amazed.  Have a good day all.  I will update if there is anything new. 

Moving already

Out of the PICU and onto regular pediatrics.... Didn't think things would move so quickly!

Playing games

Josh only has 2 lines left.  The central line in his neck, and one IV.  Things are moving quickly.  The chest drain was removed.  He is now sitting up in a chair and playing........minecraft.  you guessed it! Who would've though after open heart surgery he would be up and moving post op day 1. 

And a big thank you to Marcia and Scott for the balloons and teddy bear!!

Foley gone!

The catheter was removed, and he is feeling relieved.  He had his first sips of water, and the look on his face was pure bliss.  Next, some pancakes and yogurt.  He is starving!!   Have to work on the lungs today.  Taking those deep breaths and getting some good air flow.  Still lots of milestones to conquer, but we are on the way. 

Good morning!

It's been a long night.  Josh seems to be very comfortable.  No issues so far with the drain tube or incision.  He is however, having major issues with the catheter.  Somehow, he has been peeing around it.  Still has tons of urine in the tube, but has been asking for the bed pan every hour or so. They plan to remove that this morning, and then I think he will really happy, and more comfortable.

The only pain meds overnight have been tylenol.  

He has,food belly sounds this morning so it looks like he will be able to drink and eat today. 

We don't know for sure, but hopefully today will be removal of a lot of the tubes.  Good day!

PICU

Joshua has tubes and lines everywhere.  We counted 6.  He has a central line in his neck, an arterial line, 2 IV's, a chest drain and a catheter.  We are surrounded by awesome, caring staff.  He wants to drink and is hungry, but no bowel sounds yet, so the best we can do is glycerin swabs, and lip balm.  We are hoping that tomorrow will be some tube removal, and at least some oral fluids.  He is in and out of sleep, which is good.  He needs rest.  He did ask to play on his tablet, which we would have allowed, but it needs a bit of charging.  He is half watching Disney channel.  We are expecting a sleepless night for us, just because I will wake up for every movement.   We know that today is the worst, but we know every day will be better. 

Resting

We have been in with him for a few hours now.  The hardest thing for Dave and I is seeing him in any type of pain.  They are keeping on top of it, but there have been a few times that he has woke up in pain, and that of course made me cry.  Heis comfortably resting right now.  It's going to be a long night.  Tomorrow will be a much better day.   

All done

We talked to the surgeon.  All went well.  He is off the ventillator and his heart rhythm is good.  He is in the PICU noe, and we should be able to see him in a few min.  

Hard part done

We just got the call.  Surgical part is done.  He is off the heart/lung bypass.  Membrane has been removed, and they are now closing him up.  Still be about an hour or more before we know more.  Everything looks good.  

Surgery day!

Today is the day.  No stress for Josh. They did premedicate, Versed I believe, for all my nurse/doctor friends.  He was quite high. Definitely stress for me and Dave.  Big girl panties are on snugly.  I got emotional after I left the OR, and of course, got everyone else going.  So now we wait.    Here's the skinny.  All prep (lines, catheter, etc.) are done after anesthesia.  Surgery takes 3-4 hours.  I will post when I can with updates.  Thank you all for the prayers.  Keep them coming.

The Verdict- Heart Surgery

We have been on the edge for over a year... waiting on that Echocardiogram result that would either clear us or tell us that there is definitely surgery in our future.  As you know, last year there were major changes in the results that had us repeat the Echo 6 months later. After that we were free for another year. This year not only had the pressure changed again for the worse but there is now a leaky valve. So the verdict is that  Josh will be having open heart surgery to remove the membrane;.

We haven't received the call from the surgeon yet (just his cardiologist). The good thing is, that Yale Cardiology takes the results to the group, and a group of 10 cardiologists determine whether the results indicate surgery. It was unanimous. So while I can't tell you all when, as we don't have a date yet, it will be this summer. I am shooting for July so that he has lots of recovery time before school starts.  Once we have a date we can tell you more. We do know that he will be at Yale for 4-5 days and home recovering for another 7-10.  Mostly normal activities after 2 weeks.  While we knew that this was probable, getting the news still hit me hard.  I have my big girl panties on now.  We will need lots of prayers, positive energy, blessings.. whatever it is you all do. Love you all, thank you for being my friends and support!!

Tired of being strong

Sometimes always being strong and stoic takes it's toll. I sometimes want to scream and cry "why us again". "Hasn't he been through enough?" Enough already. While we know that the preemie journey can be rough sometimes, as they get older you think you are in the clear. You have that false sense of security. And then, BAM. News that can rock your world. I am always the positive one right? There are other moms and dads out there going through far worse than us. We have met these people. But at this moment in time none of that matters. All that matters is the here and now. The having my own freaking pity party to which only myself is invited because no one at this moment (Besides my husband who also ALWAYS keeps it together) really knows what is going through my head and how angry and frustrated and scared I am. I hold it together because that's what I have always done, it's the only way I know how. I cry alone because damn it, I don't want to burden anyone else with my feelings. Everyone has their own shit, they don't need mine on top of their own. I know my friends don't mind, but I mind. I have always done things on my own. Appearances can be deceiving. I can put on the big girl panties and deal with it the way I always do but deep down, I am freaking out. I don't want my baby to have to go through this. I have watched and held him after two major surgeries, one of which he was given a 50% chance of making it out, and the second was not a piece of cake either.

 Anesthesia scares me. Breaking apart his chest to get to his heart, freaks me out. Stopping his heart so that the can remove the membrane scares the crap out of me. I know that we have 6 months of thinking about this and praying that when we go back the news is good. The reality of this is that if not now, it probably is going to happen eventually. I was living in that fantasy that we would never have to do this and that is usually not my style.

So the big girl panties are back on. I am sure I will have my moments in the next 6 months where I quietly lose it, and I will hope and pray that when we go back to get the tests again that all is good. And in my mind,I will prepare for this so that I am not blindsided with something unexpected.  Thanks my friends for listening to my rant. Most will NEVER see this as this blog is not read as often as it used to be. Few will and get a glimpse of the real me, the one who is not always in control.

Surgery in our future?

I am not sure how many of you know that Josh has a heart "condition" called a subaortic membrane or discreet subaortic stenosis..  The short of this is he has a flap of skin growing across his aorta, which can restrict blood flow.  He was diagnosed in 2010 and we have been getting it checked yearly.  It was moderate and we were hopeful that it would stay that way forever with no significant changes.  But we were told and had read up on this and knew there was a strong possibility that this would/could worsen.

We got that news yesterday after Josh's 4th echocardiogram.  Dr. Fahey couldn't read it while we were at our visit so he said he would call us with the results.  When he did it was not what we wanted to hear. The good news is, we will do another Echocardiogram in 6 months, the bad news is, there is most certainly a surgery in Joshua's future.  Super bad news is, surgery for this is open heart - this means that in order to even get to his heart they have to go in through the rib cage and breast plate. So they will have to open the breast plate to get to his heart. They will also have to stop his heart during the surgery in order to operate and remove the membrane.  And lastly, the super, super bad news is that this membrane can grow back.

So now for the best case scenario- it was a bad Echo (the changes were significant) and we can put this off for a few years. The worst case scenario, after the next Echo in 6 months, we will be looking at surgery at Yale. I wouldn't put him in any other hands but with the rising cost of healthcare and co-pays and Yale is not in our Network, so money will most certainly be on our minds as well as Josh's health and any ramifications of having open heart surgery.

So that my friends, is the deal.  Now we wait (as we all know that is the hardest part-- the not knowing) , and my motto is always prepare for the worst, but hope for the best.  I can't be delusional and think rainbows and unicorns - I am a realist at heart and would rather prepare myself for what can happen and he happily surprised when its better than I expected.

Joshua's First Video

12/19/07 - found these that were never published.


We just used our video feature on our camera. Takes lots of memory, but cute video, except it keeps trying to focus. Here is Josh... in full action. They are not as great as I wanted them to be of course! He is yelling now, when he is not quietly babbling. It's cute but not at 4am when he is usually yelling at someone... we are not sure yet who!

Wow. I really wish I was a bit more up to date!  Joshua started Kindergarten this year. He is doing really well and starting to get better at some of those areas that he is slow in. His writing is getting better and he is working on coloring instead of scribbling. I guess with everyone on Facebook these days I don't feel the urge to update here as we have been updating on FB. Bad I know - but not even sure if anyone even looks here anymore. So here are some pictures.

Photo Card

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Merry Christmas to ALL!!!