Thursday, April 23, 2015

Update from home

Jack has been so very happy to be home! He's had some fevers but those have gone away. His post op check up with cardiology and Dr Devejian went awesome!! Besides his sats still being on the low side, he is doing great. His heart function is excellent! If he's still low they will eventually do a cath, but that wouldn't be for quite awhile. 

I'll try to post some pictures of him tomorrow, his scar looks so good. It's hard to believe he can heal so fast. 

This was such a difficult few weeks. We are always thanking the Lord that he got us through it quickly. We also thank Him for such amazing support from all of you. We all needed your prayers so much during this time. 

Thank you!!!

~Rebekah

Friday, April 17, 2015

Home!!!

He's home!!!! Jack has been happy and energetic. He's thrilled to be able to play outside!

His Sats are in the mid 80s. Not quite where they should be, but we've been sent home to recover.

We have follow up appointments next week. They're hopefully his Sats will rise as he recovers more.

We will try to post more later.

Thursday, April 16, 2015

Outside

We got to go outside today!

Sent from my Fire

Thursday

Just chilling with my iPad and olives!

No more fever, praise the Lord!

Update

Jack's final chest tube was removed yesterday! This would normally be about the time when we could be going home. Except Jack's sats are still in the low 80s/upper 90's and they don't know why. :( Initially they were thinking it was a respiratory problem, but the xrays are clear. Dr Devejian was hoping that by removing the last tube Jack would be much more comfortable and breathe deeper. He certainly is more comfortable and is very active, but his sats still haven't improved. There is talk of doing a cath to see what is going on with his heart. All indications on the echo from Monday were that everything was perfect.

On another note, Jack has decided he is so fed up with being there that he vomits every time we try to give him oral medication. And he has recently spiked a fever. Needless to say, we're getting pretty fed up with being in the hospital, and we are all ready to go home!

Please pray that Jack's 02 sats rise to where they should be (90-95) without any further medical intervention! And that his temperature last night would be a quickly passing thing.

Thank you so much.
~Rebekah

Tuesday, April 14, 2015

Tuesday

He's been getting perkier every day! His Sats are still a little low but overall he's doing great!

Sent from my Fire

Monday, April 13, 2015

Playing

Jack has been on a few big walks today and finally slept for a few hours straight! His Sats are a little low but hopefully more walking will fix that.

He loves the new toys he has been given!
Sent from my Fire

Sunday, April 12, 2015

Sunday

Here's a quick picture from today. Doing okay, fairly cranky at times.

Sent from my Fire

Saturday, April 11, 2015

Paw patrol!

Jack's favorite hospital activity is watching paw patrol!

He had a good night and a pretty decent morning too!

Friday, April 10, 2015

Friday

Overall today was a good day. One chest tube and neck Iv removed. He went for a big walk. His Sats have been good and the doctors are all happy with his progress.
As always we thank you for your prayers! He needs a good night sleep.

Friday

Jack had a good night. He was able to sleep soundly for a few hours at a time! Two of his three chest tubes are draining less which is great. We are hopeful that his neck Iv will be removed today and maybe even one of his tubes. There is also discussion of changing his pain medications. Please pray for wisdom for his medical staff so that Jack had heal as quickly and painlessly as possible.

On another note, please pray for safe travels for our daughters. They are headed down to spend a week in sunny Florida with Alex and Karen! They have been so excited for this, even though it was hard for then to leave their brother.

Thank you!

Sent from my Fire

Thursday, April 9, 2015

Morning update

Jack had a decent night. He isn't sleeping got too long and when he's awake he's uncomfortable and confused. They're staying on top of his pain meds. His vitals are perfect, with 02 Sats around 90. Please pray for a restful day. He's going to be up and walking later and hopefully can have some juice.
Rebekah

Wednesday, April 8, 2015

Extubated

Sent from my Fire

Out of surgery

We just spoke with Dr Devejian. Jack did great! Everything went smoothly!! We should be able to see him in a couple hours. Hopefully he can be quickly extubated. Please pray for a peaceful night and minimal pain.
Thank you!
Josh and Rebekah

Sent from my Fire

Friday, April 3, 2015

April 8th

We just received a call from the surgeon's office. Jack's surgery date has been changed to Wednesday, April 8th. Please update your calendars again.
Thanks,
Josh & Rebekah

Saturday, March 14, 2015

Date correction

Jack's big day has been changed again!  The new (and hopefully final) date is April 7th.

His cold is slowly getting better. We'll be keeping him home a lot over the next few weeks so he doesn't catch anything else. Please pray for his health to continue to improve and stay strong!

If you are interested in bringing our family a meal following Jack's surgery, please follow this link to sign up for a day.   Takethemameal

Thanks!
Rebekah & Josh


Wednesday, March 11, 2015

Re-Scheduled. :/

Jack's never ending cold has pushed his surgery back. He respiratory function needs to be perfect for Dr D. to operate on him. Right now our date is April 14th.  Please pray that he heals up quickly and stays healthy!

Thanks,
Rebekah & Josh

Friday, March 6, 2015

The Fontan

Last Stop, the Fontan.

Since it's been almost two years since my last post, I'll give you a quick update. Jack's health overall has been great. He's developing wonderfully! He's very chatty and has an incredible memory. Jack loves playing with tools, cars, and his sisters. He continues to make us laugh and put a smile on our faces. :)

Jack's FINAL open heart surgery is March 17th.  I can't even begin to tell you all how wonderful it will feel to be done with surgery.

 Jack's doctors have told us that he is a prime candidate for this last stage. His body is certainly ready for it, though at first glance it's hard to notice, he has been getting out of breath when he plays.

This surgery will increase his O2 sats to between 90-95%! That's a big jump from 80%. He shouldn't be blue and he shouldn't get so winded. As we have noted before, our bodies are kind of over-built.  Most of us have two pumping ventricles, and all of our circulating blood gets routed through the lungs.   His system works differently. He's not pumping all of his blood through his lungs.  Currently only the blood from the top half of his body (through the Superior Vena Cava) gets routed to the lungs.  This coming surgery, called "The Fontan," will re-route the blood from his lower half (through the Inferior Vena Cava) into the lungs also.  So all the de-oxegenated blood will bypass the heart and go to the lungs passively (or through the squeeze put on by the rest of the cardiovascular system.) Jack's surgeon, Dr Devejian, does his Fontan slightly differently than the picture below. He does the conduit within the right side of the heart, but you can get the general idea.


The risks of this surgery are low. However we'll have new challenges this time around, being in the PICU with an active 2 year old will be very different, than with a sleepy baby! We're gearing up with lots of books, toys and movies. Please pray that Jack's heart stays strong and that he recovers quickly. We're also concerned about how his sisters will handle it, Grace is 7 and Claire is almost 6. They love their brother so much.  The PICU takes strict precautions for young visitors.  We're hoping that they will be able to see him after a few days.

Recently in a study, I came across Psalm 33:20.  "Wait in hope for the Lord; he is our help and shield."
I was reminded that while we are waiting for anything, even if it's something we wished wasn't coming, that we should be doing so with hope. For with hope, we can look expectantly to see how God will act on our behalf.  He knows our needs. So we set our eyes on the only hope that satisfies.

On a different note, Jack is this years Capital District Heart Walk Hero! It's a huge honor. We would love for everyone to join us on Team SuperJack! Here is the link to follow: Team SuperJack.


Here are some pictures to to remind us all how far God has brought us.

12/10/2012 A few days old



12/23/2012 First time holding him again!
First bottle
First time home! 1/7/2013


Back in the hospital after some scary 02 sat drops. April 2013

Post Cath, April 2013
Post Hemi-Fontan April 2013

Heart Walk May 2014


Florida December 2014

Playing in sand

Loves playing in water!