2 Weeks Post-Op

Jack is doing great!! He is adjusting to life at home well. He even got his first haircut!

He doesn't need to go back to the cardiologist again until July!! It's incredible.

We are feeling so blessed! Thank you to the so many people who have prayed for Jack and for us during this time.

Jack and Dr. Devejian

At the park (post haircut)

First Haircut!

HOME!!!

I am so thrilled to be able to announce that Jack is home!! Our little heart warrior is back where he belongs.

He spent a good part of the afternoon 'talking' to his sisters and intently watching them play! The challenge will be getting him on some sort of sleeping routine after spending a few weeks in the ICU!

I'll post pictures soon. Thanks everyone for the prayers!

~Rebekah

Almost home!!

It's hard to believe Jack's surgery was last wednesday. He is almost ready to come home!! He has been off oxygen since this morning and hasn't had a problem holding his oxygen saturation at 80%.  Jack is such a happy little boy, we can't wait until he is home for good! After this operation we will no longer need to monitor his sat's and weight at home and our appointments will be farther apart. It's hard to fully grasp that he is doing so well and that we don't need to worry about him! We are so blessed! God certainly heard our prayers for a quick recovery!

What a WONDERFUL day!

Jack had such a great day! We've been rejoicing all day over the accomplishments.

His two chest tubes, cardiac line and breathing tube were all removed!!  The difficult thing today was not being able to feed him. He is getting nutrition through his IV but he probably still feels hungry. Hopefully tomorrow we can give him a bottle! And maybe even hold him if they remove the arterial line in his femur. :)

Jack is such a sweet and strong boy! The doctors are all thrilled with his progress.

Morning update

Jack had a fairly quiet night. The issue this morning is keeping him
calm. The little wiggler won't stop moving! They are changing up his
sedatives today and weaning his ventilator settings. His face is
pretty swollen but that was expected (his superior vena cava was
hooked up to his pulmonary arteries and until his body adjusts to the
new pressures, blood will be backing up). He is also hooked up to a
pacer to regulate his rhythm since the pressure on his heart has
messed up his P wave.

Josh and I thank God for all of the people who earnestly prayed for
Jack yesterday! We feel so blessed to be supported in our petition to
God for Jacks life and health. This recovery will be difficult but we
are praising God for every little accomplishment along the way!

Rebekah

Hemi fontan complete

After a long day Jack is finally back in the picu. The surgery went
well. He is still intubated and has lots of tubes on him. We're
expecting a tough recovery but we know he can get through it!
Continued prayers for his recovery are appreciated.

Surgery Wednesday :(

After a few good days and being so close to going home, Jack had many
episodes of desaturations on Sunday. Dr devejian has decided that it
is best to go ahead with the hemi fontan surgery Wednesday. Please,
please pray for Jack, his surgeon and all of us for strength, comfort
and wisdom.

-Rebekah

Oxygen therapy

After meeting with the cardiologists, Jack's surgeon has decided to send him home on oxygen. He has been constantly on one liter of oxygen for the past day and has not had any episodes of de-saturation. They think that the extra oxygen is relaxing his pulmonary vessels which allows his blood to flow the way it should. Dr Devejian wants Jack to be monitored through the weekend and then come home to get bigger! The hope is that keeping him on oxygen will allow him to come home and grow more so that he is a better candidate for the Hemi-Fontan surgery in the next several weeks.

Jack is quite comfortable in the PICU. It probably helps that he is a favorite among the nurses who all love to come play with him!

Thanks for praying for him. Please continue to do so! I will update when we have more news of his next surgery.

Strolling through the PICU & flirting with the nurses. :)

Fwd:

Cutie sleeping off the anesthesia.

Out of Cath

Jack did great for his cath! They didn't find anything to explain why he has episodes of de-saturations but all the findings will be discussed and they will determine when his next surgery will be done. I will post tomorrow.

Back in the hospital

Jack's oxygen saturation dropped to the low 60's on sunday so we had to bring him in to Albany Med. He recovered back to the 70's where he normally is. The doctors aren't sure why this is happening to him (this is the second time he desatted). A cardiac cath procedure is scheduled for tomorrow around noon and hopefully we'll be able to understand what is going on inside him!  He might need the second surgery sooner than expected. Prayers are appreciated.
~Rebekah & Josh

3 Months Old!

It's hard to believe our handsome little boy is three months old! Every day we enjoy his sweet little smiles and coos as he becomes more interactive and aware of his surroundings.  Jack truly is a gift from God!  It's hard to think about how close we were to losing him a couple times.

The only visible sign of his condition is blue lips and purple hands/feet. His oxygen saturation's have been mostly in the upper 70's which is to be expected. He is up to 11 pounds! All of his cardiology appointments have been very encouraging. Jack will have to undergo a cardio cath procedure sometime in April to measure the pressure in his pulmonary artery which will let the doctors know how ready he is for the next surgery. The next surgery is called a Hemi-Fontan and it connects the superior vena cava to the pulmonary artery. After that his saturation's should be in the upper 80's!

We feel very blessed that our family has been so healthy this winter! Jack's pediatrician is insistent that he stay far away from public areas since he would have a more difficult time fighting off any illness than a normal baby. We are certainly looking forward to spring being here soon and getting out of the house more!

We really can't express enough our appreciation to everyone for praying for him. We are so blessed to have such an great community (all across the country!).  We give all the glory to God for saving our precious little boy!

Follow Up Appts

Jack's been home for 11 days and he's doing great! We met with his cardiologist, surgeon and pediatrician on tuesday and the little man endured an echo, X-Ray, EKG and bloodwork. The results were awesome! His heart is functioning well and the right ventricle is pumping strong. He gave the doctors a good surprise by quickly putting on weight and doing normal things that baby do (like keeping us up at night!).

Grace and Claire enjoy having their brother at home and are eager to help! I'll post pictures off the three of them soon.

-Rebekah

i'm home!! Praise God!!