Looking back...

I have uploaded some pictures that we took while on our adventure to Boston for Jack's open heart surgery.  It is a review of our experience.  Some of the picture show off the handy work of the skilled surgeons, so be aware.  It is amazing to look back and remember...both good and bad from our experience.  It was a trying time for our family, but we came out of it on the other side!!  I can not thank everyone so much for all the prayers and notes of encouragement!!  I truly believe that it got Brian and I through this time.  Jack is an amazing, strong, and brave little man.  He is such a trooper!!

 Jack on the plane watching Toy Story as we fly to Boston.

 Jack checking out the bathroom on the plane.

 Jack in my lap while flying on the plane.

 Jack before his heart cath.

 He was a little scared...but did great!

 We took Jack to the aquarium...he loved seeing "nemo".

 It was a great day as a family!!  (we missed Evie, though)

 The night before surgery.  

 Scar free for the last time...

 The dancing...

 In the CICU,  on Dec. 6th, right after surgery.

 Breathing tube gone!!

 Playing with woody

 Standing up for the first time, Dec. 10th

 Chest tubes gone...and playing in the play room.

 Time to go home...

 Jack with his "mended" little heart

 Ready to go

Jack loved all the stickers he got after every procedure.  It got us through each one.

It is hard to believe it has been two weeks since the surgical team took Jack from Brian and I to have open heart surgery.  It seems like yesterday, but at the same time it seems like so long ago.  Brian thinks that Jack is getting more oxygen to his brain because he is talking like a 5 year old...very complex thoughts...:) 

We are home! Both kids are asleep in there beds...I don't know if it will last, but it is nice for now!! Brian and I ate dinner and are hanging out watching TV with just the two of us.

We have a follow-up appointment with cardiology at UAB on Monday at 1:00. I am hoping that we will get off some medicine. Jack takes lasix twice a day, blood pressure medicine once a day, potassium medicine because of the lasix twice a day, and a baby aspirin once a day.

Our adventure is almost over. We head home tomorrow. The plane leaves at 10am. We head to Atlanta to pick up our car and Miss Evie and then drive to Birmingham. Jack has has a pretty good day. He hates taking all of his medicine, but does it anyway. I think he just needs a normal life back...don't we all!!

We have left the hospital!!! Jack is free to boy!! He is now a boy with a perfect mended heart with some extra hardware on the side. And we are hoping that we never have to return to children's hospital Boston. But if we do, we know we will be well taken care of!!

My mind is more at ease. We had a talk with Dr. Breitbart about the pacemaker weakening his one ventricle and he said that he did not have the statistics in front of him but Jack's need or not need for a heart transplant would not be because of the pacemaker. The ventricle might become less efficient or it might not. Only time will tell.

Best news!!!

After talking with Dr. Breitbart, the cardiologist, and the nurse practitioner late today, we were told the best thing we have heard since Jack made it through his open heart surgery...we get to leave the hospital tomorrow!!!!  YEAH!!!  I am so ready to leave, and I know Jack is ready.  All night last night he kept saying "I want to go home".  Now, if I can only get the poor kid to understand that we are going to stay with our family friends for two nights here in Boston before flying back to Atlanta to get Evie and then to Birmingham.  We want to stay some days to just make sure everything is good.

Tomorrow we have another x-ray to check for fluid in his chest and lungs and blood work.  But as long as both look good we can walk out the doors.  We will meet with EP (pacemaker people) one more time, too.  We are a little discouraged about Jack's pacemaker.  On Friday the pacemaker was set to watch his own rhythm and pick up if his ventricle doesn't beat.  Well, as of today his ratio is 2:1 (for every 2 beats of his atrium, he is only pumping his ventricle once) so they had to set his pacemaker to beat his ventricle every time.  So, in other words he is continuously being paced.  In any other kid, this would not be a bad thing, but Jack only has one ventricle and this constant pacing is not good on the longevity of his one ventricle.  We need this one ventricle to last the rest of his life, in order for him to avoid a heart transplant, and if the pacemaker weakens this ventricle it might cause us to have a transplant sooner rather then later.

So, because of the pace maker, Jack will not suffer a stroke due to a irregular heart beat, which has always been a huge fear for me.  But the pace maker could cause Jack to need a new heart...and after our time here at the hospital, I just don't wish that on anyone!!  I sit day after day while here in his room and walking the halls of the 8th floor, and I see all these kids and adults who are just waiting...waiting on a second chance at life, and it is so depressing and sad.  All of these people deserve that chance...the chance to live without having tubes keep them alive.  I know that Jack is special...and I know that I have to let his heart and his life go and just live each day.  His life is in God's hands! It is just hard to let him go sometimes.  I am a fixer and a planner and I can't do either for Jack.  I am having a hard time dealing with that.

Jack has had a pretty good day.  We played a lot in the play room.  He met a lot of great friends...and loved the train set that they have in the play room.  We also found a trike that Jack just loved riding on around the halls.  I don't think I have seen him smile this much since before surgery.

Mail for Jack..

Jack received some mail today...he was so excited.  I just hate that I did not get a picture of his face when he first opened the card from his Bell Center class.  He got the biggest grin on his face.  It made my day!!  Thanks, BC family!!!

Good news!!

Look:

NO TUBES!!!

Through the night, Jack's chest tubes did not drain but 6cc all night, so we got the best news this morning.  The tubes get to come out!!  He is so much happier to now be able to move around without tubes.  But he is very wobbly.  He wants to walk, but he can hardly stand.  He is being a little demanding, but I guess I would too.  He is happy as long as he is being pushed around in the go cart...not so happy in his bed.

My cousin lives in New York.  This is a picture that he just sent me:

Thanks, Adam!! Jack is representing in Central Park.

Great news...Jack finally pooped!!! Way to go kiddo!! Now, if these tubes would stop draining, we would be in business!!

Is this day over yet?

Wow, it has been a long day!  I feel like the room is getting smaller, too.  Our new suite mate has left for home, and yet we still sit.  Jack is starting to loose it...and so am I.  I feel, at times, if I hear the word "no" one more time I am going to scream.  

So, it looks as though the chest tubes are not coming out tomorrow...hopefully Monday.  He did get out the external pacer wires and the IV in his hand.  So, all we have are the chest tubes.  He still has not pooped, despite getting every pooping drug out there.  Not much has changed from earlier. 

It is Brian's turn to stay with Jack tonight, so I at least get some sleep.  

I ran into the sweet baby's mama that got the heart, and she said that he is doing great!  His breathing tube and one chest tube is gone.  His mom did say that we they removed his old heart it was so deteriorated that he could of had an aneurysm at any moment.  He is one lucky little boy!!  I told mom that all of you guys are praying for them and she was so touched!!

Some new pics from today!  He got a Thomas the train toy from the playroom.

Today's update

Jack had an eventful morning, but a very peaceful afternoon.  His chest x-ray from this morning looks "beautiful" said Dr. Breitbart but he is still draining so the chest tubes have to stay in---stink!!!!  He said that maybe the chest tubes could come out on Sunday, which puts us further in the week before we can come home.  Jack did get his IV removed from his foot--so when he wakes up he can finally stand up and walk around--I am very excited about this.  Jack still has an IV in his hand.  Because all the fluid is draining off his lungs, Jack's O2 is so much better and he is able to get off the nasal cannula.  Bye-bye one more tube!!

So, to date we are on blood pressure meds, lasix, and some other diuretic.  He is also taking miralax, because he has not pooped yet...but I am hoping that walking around will help with this, and some pain meds...

We are moving in the right direction...just slower then i would like.  :)

Jack's first ride

Late yesterday, after his very long day, we got to put Jack in a go cart and walk around the unit.  I took a pic with my iphone.  I know he looks mad, but it was because I took the picture and made him stop moving around.

of course nemo, buzz and woody had to come along for the ride.  I don't think you can really see it in the picture, but we also had to bring a thomas the train balloon (which is as big as Jack--thanks to Brian for the purchase of the huge balloon).

HUGE NEWS!!!

Something amazing happened last night.  This step down cardiac unit can be very depressing.  There are just so many sick babies, kids, and adults just waiting...most waiting for a heart transplant.  I can not imagine just how that feeling must be...just sitting and waiting for another life to pass, so your kid can get a heart and live.  But last night, the most amazing thing happened that even words can not begin to explain it.  Our suite mate, the little boy who needs a heart, got the call!!!  He got his heart!!!  They got the news at 11:00pm and he went into surgery at 6:00am this morning.  I get chills just thinking about it again.  I am just so very happy for this sweet little man and his family.  Please lift this family up in your prayers that the surgery goes perfectly and his body loves ands excepts his new heart.

Just another day on the step down unit...

It has been a long day at the step down unit.  Jack had a lot of poking and prodding--blood drawn for levels, more medicine through IV, and medicine he is suppose to take by mouth.  Tell me this...why do they make medicine so nasty and then tell a toddler to take by mouth.  It is called flavor...and no putting it in apple juice does not make it easier.

Jack's oxygen kept going down throughout the night and into this morning (down to 80% with 2L of O2).  The docs kept saying it was the pain and fluid...but after some chest x-rays, it was determined that his right chest tube had a blood clot in it.  The nurses did some messaging of the tube and got the clot to break up and now he is draining like crazy.  His oxygen has gone up to 90% on .5L of O2.  His tummy was so descended before, is now coming back to normal.  His weight is even better.  He was up something like 3 pounds since surgery (which makes no sense because he is hardly consuming any fluids)...they are going to recheck his weight when he wakes up.

Poor guy tells everyone "no" or "not this" when they walk in the door now.  If I ever thought he had a dislike for doctors and nurses before, well, he definitely does now.  He is not up for talking much.  But I am hoping that once all this fluid leaves his chest and belly, he will feel better. The doctors are saying that he should get the chest tubes, external pacing wires, and his dressing out tomorrow and we have a scheduled echo at noon on Monday.  Dr. Breitbart said that we will be here at least a few days once the chest tubes come out.  We are also waiting to hear if they want us in Boston for our first follow-up appointment or if we can do it in Birmingham.

Every time Brian or I get a little antsy about being here, we just look at our roommate or the other kiddos on the floor and see how blessed we are.  Our little roommate is waiting on a heart transplant.  He has TGA but a couple of hours after is corrective surgery when he was just days old he suffered a massive stroke in his carotid artery that should have killed him but instead he lived.  However, the stroke  has caused so much damage to his heart that it is no longer working for him and he is here waiting for a new one.  It is hard to feel sorry for yourself, when I know we get to go home next week...and this guy might be here for who knows how long.

Pics of Jack

These are two pics of Jack taken right before we left the CICU.  He had just been given some morphine so he was making faces with nemo.  This picture was taken with Brian's iphone.  We have our camera and have been taking pics, but of course we left our cord at home so we can not transfer any pics from the camera to our computer.  

He now has a nasal cannula because he is congested and still doesn't really want to cough hard.  They also want me to do some chest PT on him...ok guys, if you only knew how long ago that was--about as long as it has been for me reading all these EKG strips.  But I will dust off my skills and start beating away.  The nurse gave Jack some Oxycodone along with his motrin and he has been out for the count. His O2 with the nasal cannula is resting right at 90%. 

Jack has officially been moved to the step down unit. He is so much happier with less wires and tubes attached to him...well, and the extra dose of morphine, too. After he got the morphine, the old jack came back. Asking for water to drink and talking about Thomas the train, nemo, woody and buzz. He told me that "sissy can't play with nemo. She plays with the alien" (the alien toy from toy story). He was so cute, and actually smiled. The CICU nurse asked if we needed anything...and I asked if they could keep giving him morphine because I like him happy. They laughed. I think it showed everyone just how much pain he was in..poor kid!! He is now resting in his new home away from home.

Post-Op day 3 and counting...

Jack has recovered great from yesterdays unexpected trip to the OR.  Brian stayed with him last night in the CICU, because he can sleep through anything (even though he only slept a couple of hours).  I went back to the hotel and got some rest.  Jack did good through the night.  He is in a lot more discomfort right now and wants to be picked up.  I got to his bedside at 6:30 am to trade off with Brian, so he can go get some sleep and do some work.  Right after I got here, the team had to give him some plasma because his clotting factors were low from being on the bypass machine.  He has some congestion in his lungs, but they are ok with it.  He needs to cough, and does at times, but it hurts him.  He is stating in the low 80s, which I don't like, but they don't seem to concerned about it.  The plan for today (as of right now) is to take out all of his lines except his drainage tubes in his chest and IV line for fluids and transport him to the step down unit.  Poor kid is finally resting right now but is just miserable.  He is not really into drinking...I just think he feels crummy!

I am hopeful that things will keep going in the right direction.  Of course, I  analyze all of his data on the computers and I ask questions every time, but everyone says it is all the way it is suppose to be for now.  So, I try to turn my brain off from what I know and relax.  Easier said then done.

When we got back to the CICU to see Jack, they had already taken out the breathing tube. Now, they just want to see more urine output. They have started him on lasix...pray for pee :).

Ok. The surgeon just came out. They found the sponge and it is now out of Jack!! They were able to get it out without opening the ribs. He is going to recovery and hoping to get the tube out before making it up to the CICU room.

Hoping and praying this does not set Jack back too far!!

last night...and some unexpected things

Jack really did great last night.  He ran a temp of 102 around 9pm that made him a little agitated, but other then that he did good.  His internal pacemaker had some problems so they had to pace his atrium with an external pacemaker and let his internal pacer pace his ventricle.  After these adjustments were made and his fever started going down, he slept very peacefully.  He started pulling out tubes around 2 am so the cardiologist decided to extubate him, so at 2:30am his breathing tube was officially removed.  YEAH!!  This made Jack so very happy.  The nurse told us that he could not have anything to drink for 4 hours after the tube was removed (those of you that know Jack well know that he loves his juice).  Lucky, he slept almost the whole 4 hours.  He woke up at 6:30 this morning asking for juice.  The nurse wanted to only give him sips at a time, and Jack would grab the juice cup from her and keep drinking.  We all felt so bad having to limit his juice, but we did not want him to throw up.

An unexpected turn happened at around 9:30am when the surgeon came by to take a look at Jack and review his post-op x-rays.  He noticed something odd on the x-ray.  After more films where taken and a lot of other  doctors reviewing the films, it was concluded that they think they left a sponge in his abdominal cavity.  So, our whirlwind began...Everyone saying "sorry", "this has never happened here", and things like that.  So, poor, sweet Jack is currently being put back under with a tube being placed so the doctors can open him back up to see if, in fact, they left a sponge inside him.  The surgeon is just beside himself and said that the counts in the OR accounted for every sponge, so he doesn't know how this could have happened.

A friend sent me this verse: "This is the only thing I could think of right now:
"Hear my cry, O God; attend to my prayer.  From the end of the earth will I cry unto thee, when my heart is overwhelmed; lead me to the rock that is higher than I."  Psalm 61:1

this verse sums it up right now!!  I am not mad or angry.  I just hate that Jack is having to have a tube placed again and we are looking at about a 6 hour set back.  I am just sick for him!!!  All of this came after the cardiologist said Jack was doing "spectacular"....

So, here we are again...waiting in the the surgery waiting area...Please pray that they find this sponge and get it out quick so they can get the tube out before bringing him back up to the floor.

We got to finally see Jack at around 4:45 today. It was so hard to see him lying there with all the tubes, but at the same time it was so nice to finally see him after this long day! He is doing great, really. He keeps trying to wake up and they give him some more medicine to keep him sleepy. The hard part is seeing him wake up and try to cry out and can't. All of his levels look really good. It is just a waiting game now.

Thank you, everyone, for all of your sweet notes, thoughts and especially prayers!! Brian and I would not have made it through today without them!!

It is over!! He is being taken up to the CICU now. The surgeon said the pacer wires took a little longer to place then he had thought but everything else went good. Now, we have to wait an hour before we can see him...

Jack is off bypass!!! I am so happy! The doctors are now placing the pacer wires, now. Then, the doctor will come out and talk with us.

Another update: nurse just said they are warming jack up in preparation for taking him off bypass. Then they will place the pacemaker. She said he is doing well.

Another update from the nurse: jack is doing fine. He is now on bypass...and the surgery is beginning.

Just made the incision. Jack will now forever have a "cool" scar to show his friends. I'm hoping it works as well for him as it has for Shawn White.

Jack dressed a ready

This is a picture of Jack before going back to have his heart surgery.  Poor guy...he had no idea what is about to happen.  He was dressed for the part, though.  He had on his thomas the train pjs, nemo, woody doll, buzz and woody mini notebook, crayon (red is his favorite right now), buzz lightyear blanket, and car house shoes.  Oh, and don't forget his "cowboy" hat. 

The nurse liaison will give us messages throughout the surgery. It was so hard to let them take him, but he is in the best hands!!

They just took him back...along with nemo and woody.

Brian, my dad, my aunt and I took Jack to the aquarium today! It was such a great day away from the hospital and doctors!! He had the best time! His favorite fish was the nemo fish. He liked the shark from a distance, but not up close. Now, we are trying to get a toddler to go to sleep, but he is running around the hotel room like it is 2 in the afternoon :).

He is finally awake! And we do get to leave the hospital today. He had several desats to the 40s and needed some puffs of oxygen. He woke up asking for juice, buzz and woody, and Alvin and the cimpmunks on the DVD player. That's my boy :).

Jack is back to the room sound asleep. The doctors said he did great. He did not suffer any heart block during the procedure (praise God-huge answer to prayer), but he did have some low heart rate down to the 40s. Dr. Breitbart did say they closed off one collateral vein, but that everything looked pretty good. He is going to talk with dr. Mayer (surgeon) and come back and give us more details later today. He said that jack should be able to leave the hospital today ad long as he wakes up ok and does well.

So far, things could not be going any better!! Keep up the prayers!! I have felt such a peace...thank you!

Jack is out of surgery for his heart cath. Nurse said he did great, but we do not know any details. I will update when we know something.

Jack is out of surgery for his heart cath. Nurse said he did great, but we do not know any details. I will update when we know something.

Jack is back for his heart cath. He was not happy to see any doctors and nurses this morning. But once they gave him the sleepy medicine, he was so much better. They are having to place two cath lines, one on each leg in case he goes into complete heart block and they have to temporary pace him until his big surgery. We are praying that this doesn't happen!!

tomorrow and heart cath

We are to be back at the hospital at 7 am.  The heart cath should take 2-3 hours.  After the cath he has to be still for 4-6 hours.  Now, how do you keep a toddler still for that long...I hope we have some great nurses.  We might have to spend the night if the doctors have to preform any procedures during the cath...but if they do not then we might get to leave the hospital that night.  I am hoping that we get to leave the hospital.

Thank you so much for all your prayers and thoughts!!  They were truly felt all day long!!

done with the hospital for today and information

Jack did great!!  He was better then I could have every asked for.  We arrived at the hospital at 7:30am and did not leave until 4:30.  Wow, what a long day.  It was filled with talking to every team member that will be taking care of him (anastesia, cardilogist, CICU team, pacemaker specialist/cardioloigst  I got to hold a pacemaker in my hand...technology is amazing!!  We did learn today that because of his Fontan procedure, he will always have to have his pacemaker in his abdominal.  So, the original thought of it being moved up to his clavicle area can not happen because of his soon to be corrective anatomy.  Dr. Brietbart showed us exactly the procedure he was going to do on Monday.

Before I explain...imagine this image switched with the left side being on the right and the right side being on the left (which is Jack's defect L-TGA with double inlet single ventricle and pulmonary stenosis).  So, the Fontan consists of stitching the superior vena cava and inferior vena cava through the anatomical right atrium (R.A. in this picture, L.A. in jack), making an artificial wall to make a chamber and leaving a small hole for pressure to not build up, and cutting the pulmonary artery away from the hear itself.  The small hole is likely to close up on its own as the body learns to function with the new O2 stats.  If it does not close up within a year, they will go back in and close it.  It is really fascinating when you stop and look at it.  It is truly amazing how far modern medicine has come.

HR is 61, O2 is 94 (best ever). Jack was not showing signs of any heart block when the EKG was performed. Cardiac echo finished. Now just waiting to talk with the docs about the heart cath tomorrow. Looks like we are going to have to stay over night at the hospital after the cath tomorrow. He is doing great!! Just flying buzz and woody all over :).

At Boston children's hospital...

As most of you know my son, Jack was born with a congenital heart defect called L-TGA, a large VSD, pulmonary stenosis and double inlet single ventricle. Jack has been a miracle since birth and skipped every surgery up to this point. On, November 5th we went to the cardiologist for our 6 month check-up and after all testing was finished, it was discovered that Jack's heart is in 2nd degree (with some 3rd degree spikes) heart block. The cardiologist said jack needs a pacemaker...our world was turned upside down again. We always knew that this day could happen but it hit us like a tons of bricks. So, over the last several weeks we have been to many doctor appointments and jack has worn a heart holter. After talking with the cardiologist up in Boston, a date for surgery has been set. We are currently at children's hospital of Boston. Jack is scheduled for a cardiac echo today, a heart cath tomorrow, and his BIG corrective open heart surgery (the Glen-Fontan procedure) and pacemaker placed on Monday. I plan on posting updates as we have them. I am so very scared, and afraid about the surgery and about jack's further!! We have been so blessed to be a heart family, but in a distance because he has been so stable up until now.

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