Day by Day

We are settling into the idea that JJ's heart is much more significantly damaged than we thought. Of course we are still a little distant from it and that seems to be the only way to still do all the things we need to do everyday. Being overly traumatized and saddened at this point doesn't help anything. We are just upset enough to be seeking all the answers and information we can. I research and read as if it were someone else I was concerned for. Jerry is so constantly funny that he makes it easy to focus on other things in our day to day life. One of the biggest comforts I have is the CCF list serve. All parents of kids with heart disease who vent, and offer support and information to each other. Truly, these people know what we are going through. Right now we just need prayers for finding the answers we need, prayers for the doctors to recognize what steps to take, and for Jerry to avoid as many viruses as possible. My instincts are telling me Jerry is good for now. I don't think that he will be in critical shape with his heart in the next few years. So we just take each day as it comes.

I wrote all that last week and never got back to finish it. Today I am waiting for a call from Dr. Towbin. He is the guru for pediatric cardiomyopathy. He runs the program in Cincinnati Childrens Hospital and will sometimes offer to talk to parents about their children on the phone or work with them and their area doctors. I wrote an email to him about JJ and he wrote back that he would talk to me on the phone. He thought he could call today so I hope he does. I am so worried about the kids interrupting me when I am talking with him. I may have to just lock them in the closet. Just kidding in case anyone is coming to their rescue.

A worrisome incident last week when there was a mix up and Jerry did not get his evening dose of heart medicine. He seemed OK except for a little trouble with heavy breathing in the am when waking. He does this sometimes in the am but it seemed a little more than usual. Then he was fine until we went to meet John at Pizza Hut for dinner. Getting out of the car he said he was sick and looked really pale. He just wanted to go home and was laying on me and mentioned that his belly hurt. I thought he was falling asleep on me and then he made some sounds that sent us to the bathroom he was very out of it and threw up a little...like trickled out as he hung his head. Very strange. John came and I took him home. We both thought he looked a little blue in the area around his mouth but he has had this before and docs have said it is OK. He laid on me at home for a little bit and then seemed fine ever since. I gave him that evening dose of heart med a little early. It is a question if that was his heart but it is good that he recouped quick from whatever it was. pics this weekend for sure!

A poem to speak for Jerry and others

I received this poem in an email from a fellow CCF (children's Cardiomyopathy Foundation) member.


A Life yet to Come
By David Moore

My days were numbered from the very start
I fought for every breath due to my heart
My PDA closing I started to gasp
Just trying to breathe became such a task

The medicines they worked for a couple of days
But my heart still beating like I was running a race
It was beating so fast it was wearing me out
My heart was failing there was no doubt

My parents were worried, distressed, and confused
The tears now flowing due to the news
Tomorrows the day I go under the knife
I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor
I had not the energy to play on the floor
I'm feeling so weak I just want to sleep
Something my mom is watching is starting to beep

I can hear them talking but just don't understand
I am still comforted by the warmth of her hand
The tone in her voice as she started to speak
Something about Jesus and my soul to keep

I have my eyes closed but I still see the light
I am very little but I know something's not right
I hear my mom cry as I took my last breath
But I am too young to fear this thing they call death

The first thing I saw when I reached toward the glow
Was the figure of a man that for some reason, I know
He wrapped me in his arms and I felt so safe
I reached up to him and I touched his warm face

He spoke so softly as not to startle me so
he told me he loved me and was letting me go
He told me a story of my life yet to come
That one day my living would be witness to some

I don't know why and I still can't explain
But I opened my eyes when I felt a sharp pain
I took a deep breath and I started to cry
I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed
For some reason I am stronger and wanting to be fed
My parents don't know it but I saw God that day
He gave me more time to frolic and play

God has his reasons that some live and some die
What some parents have to endure leaves a question. Why?
I know it's not fair but I don't question the choice
I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see
Because without it there's no story, no poem about me
I'm one of God's miracles a testament to his grace
I was only a week old but I got to touch his face

Eating...How Does it Fit in the Picture??

Jerry had that one night he was running around (see post below) and he has ate pretty well that day. Since then, the last two days, he ate close to nothing. He is still acting OK for the most part. He is happy and seems OK. But he is saying he is tired sometimes. He even told me "my belly is tired." On a funny note...when I last asked him what his belly is saying (is it full, hungry, wants more pasta), he sighed in frustration and said "Mommy! My belly is closed up inside. It does NOT talk to me." Well, OK then. I'll have to find an alternative method for getting you in touch with your hunger.

We know that in the past JJ has had trouble eating because there was no blood flow going to his stomach to digest his food and he would feel really full or sick from eating small amounts. He likely even had chest pains from eating. Then we were on the track that his remaining eating issues are mostly psychological. He had learned that finishing food or eating more than a few bites feels awful and it became a very ingrained habit. But now we are being told that his heart could be causing his ups and downs in eating, appetite, and growth. So frustrating!!!

No one can begin to understand the stress involved in the whole eating and growth issue until you have lived it. There is so much guilt involved when he doesn't eat well. Also the guilt of wondering if we have done him a disservice not giving him a feeding tube. But with that said....I really know that there is no rhyme or reason to his eating and appetite. He can chew and swallow anything but there are just days he has no desire. And I know that my instincts and my research lead me to believe the feeding tube is not right for him. There can be so many complications and he can eat. If it was a heart issue it would make a lot more sense because it doesn't really fit any other classification of eating problems such as texture aversions or behavioral defiance. The only thing that is suffering is his growth. He is not going to be a linebacker.

Hopefully, tomorrow will be a better eating day.

Running Really Fast!

Thanks to everyone for all of your concern, prayers and support on the blog and in emails. It helps so much and I am happy that I can show Jerry as he grows how many people have loved him and prayed for him. My anonymous friend that has a 35 year old waiting for a heart...I would love to connect further. If this idea is mutual you can leave your email or email me at suezchi@comcast.net

Waiting for the reports from cardiology. It may seem strange that that is the best way for me to get more information but it really is. I can decipher most of the report and look up what I don't understand. That gives me a stronger basis for figuring out what further questions I have. At the end of our 5 or so hour appointment, after we have been gone since 6:30 am, I usually do not feel I can clearly articulate my questions and just want to be done. Especially after totally unexpected news.

Jerry's heart medicine was increased at his last appointment and it seems like it is making some difference in his endurance. Not scientific of course and he does have ups and downs, but he is seems to be able to be much more active for longer stretches without being out of breath and coughing. Usually he can't walk around the block without a lot of stops and he did. And tonight he ran around the first floor circle of our house for maybe 10 minutes straight with Isaac. He was so proud saying "Look at me mommy, I'm running really fast." The calorie burning was killing me but I also love to see him so happy and acting normal. He has been more willing to walk up the stairs instead of crawling. He had been pretty consistently walking up until after the illness that landed him in the hospital. John and I just watched him in amazement thinking it just can't be true that his heart is not OK. In reality though, it is a common story for kids with heart disease and has always been true for Jerry that he looks so much better than he is. I might try to put a little video on of Jerry running around but John started running with them making faces in the camera....might of just ruined the video!

Just a few minutes before, Jerry had taken off his pjs because he wanted to "be naked for a little while."

We have recently made great progress with JJ's sleep too. We have been having to sit in his rocking chair while he falls asleep and have been taking turns sleeping on a mattress on the floor in his room because he was waking up screaming every 15 minutes or so all night. He has had issues on and off but this worst stage started after his last hospital stay. I cringe to think what we might still be in for.

Bombshell News

We learned at our last cardiology appointment on January 7th that Jerry will at some point need a heart transplant. I write this as kind of another person because accepting this as his mommy is just impossible. We have so many questions and are still trying to digest this so there is little more I can write. Please understand that if you saw Jerry you would not think this could be true. He seems pretty typical from the outside. He does have periods of being out of breath and has lots of trouble recovering from common viruses. Briefly I will just say his condition now is related to the fact that his heart defect was originally missed as an infant and there is scar tissue that is not likely to resolve as we hoped. His heart does not relax and fill properly causing diastolic dysfunction. His lungs are possibly damming up with what should go to his heart intermittently. The illness Jerry has had over the fall and winter that we thought were not impacting his heart probably were and each illness takes a toll. There are no children to compare Jerry too. Diastolic dysfunction is mostly a condition of older people with long term undetected high blood pressure and older people who have had several heart attacks.

We know we can get through this with all of the blessings we have had and with our faith in God's plan. Our little Jerry is sweet, funny, tough and has a lot of normal 2 year old attitude. We love him so much and will try to laugh more, sing more (he loves us to sing and dance with him every time the Mickey Mouse show comes on.....how we tire of this....but it's one joy we can give him now), and play more. More than anything he loves Isaac. It is Isaac he wants to hold him when he gets hurt (even if Isaac caused it!!), and Isaac he wants when he first wakes up.

More later as we learn more and get questions answered. Lots of photos to put on when time allows.

Who needs sleep?

I guess with the energy JJ is getting from food now he thinks he doesn't need to sleep. He has not slept a near normal night or nap since 2 days after the hospital stay. He was good for a few days after and then started waking up every 15 min to every hour every night. Then he had that tummy flu so we figured that was it and recovering and getting his normal eating back. STILL is not sleeping. He is fine with his new schedule...runs around happy as can be all day. The rest of us...not so happy. John and I take turns...one night him and the next me. I am not exaggerating when I say how often he gets up. Usually he does have a few hour spurt and wakes up around midnight the first time and then every 15 min to an hour screaming. Often he goes right back to sleep but not always. The closer to morning, say starting at 4am or so, he just keeps insisting that he is done sleeping and he really doesn't sleep after this even though we won't let him get up until 6:30. We mostly think he is just not wanting to be alone in his room but have other ideas that could contribute since he really shouldn't be waking up that often to demonstrate the anxiety of being alone. Sometimes he is just having nightmares....like about the Barney theme song. He was singing that and crying one night over and over.

Tonight we decided to try motrin to see if it helps because sometimes we do get the feeling with his first scream upon waking that something is strange or hurting him. If it did not work then tomorrow we were going to try moving Isaac into his room and see if that helps him. But tonight with tuck in he said he was going to puke. I mostly dismissed him but sure enough a little bit later he did. So now all bets are off for tonight. Isaac went to bed with a bad headache and not feeling well. Ahhhh, here we go again.

Cardiology appointment scheduled for Friday. Even though we are usually sure his heart is fine and stable there will always be this lingering fear that the possible will come true...a set back, a change with big growth spurts. It's always good to have some things run and talk to the cardiologist to reassure us.

23 pounds again!

We had reached 23 pounds right before JJ got sick with the virus that landed him in the hospital. That was followed by the long lasting tummy flu. Jerry is eating great again and back to 23 pounds. We are ecstatic about his eating right now and just holding our breath that it continues. Yesterday after finishing all of his food at dinner he announced "I ate it all...now I can ride Isaac's big bike!!" We tell him all the time that eating food will help him grow big. I hope he gains some inches around his belly quick. We have no pants that will stay up on him. If they fit his waist they are 6 to 9 months and then are too short! He is kind of out of diapers too so there is no extra padding for the pants to hang on too. Thanks to everyone who has been praying for us and checking in.