I was with jack through the night and here today. He had a pretty good night. He coughed every hour which made the oxygen machine go off because he dropped below 85%, but he never woke up and he would recover when I changed his position in the bed.

This morning was a little more involved. I couldn't get him to sit still, so the machine would go off all the time. He is still coughing this morning...but they say that is just the course of the virus.

During rounds this morning the doctors said we can leave!!! Yeah, we get to go home!! We are waiting to see Dr. Pearce and get our plan for follow-ups, but that is fine with me as long as we get to leave.

Thank you to everyone for all your prayers and support. Now, a new challenge begins...keeping jack and Evie away from each other so neither one gets sick. Jack needs to heal completely so his body can fight off all of these things.

Brian stayed with Jack last night, so I don't have all the details. But I do know he had a pretty uneventful night except for the O2 machine going off all night because jack changed positions or the probe got pulled or the nasal cannula came out of his nose. This morning when the doctors did their rounds they said Jack to remain above 85% on no supportive oxygen for 24 hours. I am determined to see this happen so we can go home tomorrow. The problem is Jack loves to play with his trains all over the floor, which causes his levels to drop. Because of the hole left in his heart after his open heart surgery his levels are naturally going to drop when he moves, coughs, holds his breath, or anything. So, keeping his levels up is almost impossible!

So here we sit with Jack off oxygen and at 88%.

Long day

Last night was a hard night (1/2/11) for me at the hospital with Jack. We got to our room on the 5th tower at Children's Hospital in Birmingham around 6pm...after being in the ER since 11am. One thing that is good to know, Jack gets taken right back because of his history and recent open heart surgery at the ER so we did not have to wait at all. He was able to stay on the nasal cannula last night, but his cough was terrible. Every time he coughed, he would react like an addict going through withdrawal. He would scream, kick his arms and kegs against the bed, and hit the crib sides. It was awful!! After a couple hours of this, I just broke down. I felt completely helpless to my own child. Was he just in pain? Did he just not want to be in another hospital? I hated that I didn't know what was going on with him. He would,however, fall back to sleep after each "fit". Sometimes it only happened once a hour and other times it happen 4 times a hour. It was just a really long night for me...and him. If he wasn't coughing and getting upset, his oximeter would go off due to low oxygen levels. I remember counting down each hour until it was morning and telling myself tomorrow will be a better day.

The morning (1/3/11) consisted of alot of tests and blood work. Every time someone walked into the room, Jack would start yelling, saying "leave me alone, please!" It was so hard. I am a medical professional and know how important each test was, but as a mother I just wanted to wrap Jack up and run out off the hospital. The cardiac echo confirmed that nothing "heart related" is going on and that it had to be lung related. The cardiologist did say that his ventricle is still pumping low-normal. (which I hate!! I want this one ventricle to last forever) but a call later from Dr. Pearce said that the ventricle looked "a little" better then it did at his check-up on the 20th of December. The cardiologist did allow his O2 levels to be as low as 85. Which was great because after he woke up he had to be moved from the nasal cannula to the mask (with 6L support) because he could not keep his O2 above 90%. With the new range at 85%, jack even went 3 hours on just room air before he had to put the nasal cannula back in with .5L support, which he is currently still on. After the results came back from the viral testing it was conformed that Jack has RSV. So, now we ride it out... He will have to stay in the hospital until he can come off the oxygen.

The poor boy laid around all morning like someone had druged him...he looked so bad. But when Brian came to take over tonight at around 7, he was out of the bed for the first time and playing with his trains and tracks.

Brian just called to give an update, and they need Jack to have more urine output. The nurse keeps telling us that Jack is cutting it really close. Please pray that he starts drinking more and has more output because I don't want any IVs. I just want to go home!!! I have had my fix with hospitals. I sat up at 4am reading posts from "heart" blogs that I follow, and I tried to gain strengthen from these amazing families that are going through so much more then we are. This path is not one that I would wish on anyone, and there are so many days that I want to throw in the towel...but God has blessed me with this little boy. And I want to make the best ot if...for however long I have him!!!

Here is a really bad picture I took of Jack laying on me in his bed tonight.

I haven't even had time to upload the pictures on the camera from Christmas to show everyone. But need to update that Jack is back in the hospital. Two days ago he started coughing...something Evie has been doing for awhile. Last night Jack ran a temperature of 102 and his oxygen dropped to 81%. Brian and I packed a bag for the ER, but talked to the cardiologist on call and we decided to wait until the morning (who wants to go to the ER at night...on a holiday weekend). So after a very restless night for everyone, Jack got up around 8. When I checked his oxygen it was down to 77%. I made another call to the cardiologist on call, who told us to come to Children's Hospital ER. And here we still are, except in a room under observation. They do not know why his O2 is so low. It took all day, one negative flu test, and an X-ray that showed a little fluid on his lungs (probably still from surgery but nothing significant) for his O2 to be 90% on a nasal cannula. Tomorrow they are going to test him for several respiratory viruses and possible an echo. I am hoping and praying that they figure out what is going on and that we get to go home tomorrow!! I am so very sick of hospitals!! I know Jack is too. I hate seeing him so miserable!!

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.