Tuesday, July 31, 2012

How did it go? It didn't!

My tough little guy endured lots of poking, prodding, and the worst...that big rubber band that pinches your skin and squeezes your arm.  Despite lots of patience, warm wraps, and ball squeezing, Jerry's veins could not be accessed.  Since they could not get an IV in they couldn't do any of the test.  So horrible.  He hated that rubber band part and I think just the slowness of the whole thing.  They would tourniquet one arm and clean it and feel it for several minutes then switch arms.  Then go to the other and somewhere in there attempted and moved around the needle for several minutes in each arm.   He did pretty good with the needle part it was the other part that was really annoying for him.  He said while they were doing it "stop it! You're bothering me!"  As if it was just a big inconvenience!   We bounced back quick when we decided that it just wasn't going to happen today and he was so happy with this little lunch box they gave him and happily said good-bye as we headed off for chuck e cheese.  Oh Yes, he also cried for Isaac for a few minutes who we left with Gigi.  So sweet.  So I guess what will happen is we go to Cleveland clinic main campus and get the IV (better at doing it?) there and then travel to this east side location to get the test.  Sounds like a lot and a lot of anticipation for my little guy.  I am hoping they can come up with another option.  Will wait to hear.

If Isaac has to have this I am more worried about how he will handle it.  He is not as used to this stuff and last night when I told him that I wouldn't be home in the am because we were taking Jerry for a test, he could not be quiet with his anxiety.  He kept saying stuff to Jerry..."Jerry, I am really worried and scared for you.  Jerry, I hope you are okay and it won't hurt really bad.  Jerry, I am sorry for all the mean things I ever did to you."  It was sweet yet I needed him to stop because he was making Jerry more anxious!

I always know there are worse things out there that people are dealing with and that helps me somewhat to be strong about all of it.  Here is an example of just an unbelievable story.  This family had one child with heart disease who had a transplant.  The whole family was tested and thought to be fine.  Now they have come to find out that all of their children have heart disease or flags to watch for.  here is the link.

Monday, July 30, 2012

growth hormone stim test tomorrow

The day I've been so anxious about is here.  I told Jerry tonight about the test we were taking him for tomorrow.  He pretty much ignored me the first few times and then finally just said he wasn't going to sleep tonight...as if tomorrow would never come then.  Then he asked if he needed a shot so I told him the truth about an IV and about a shot but focused on all the fun things I was bringing for us to do and that afterwards we could go do whatever fun thing he wanted.  Chuck E Cheese it is.  I reminded him that he knows how to do his breathing to relax and make it go faster and not hurt very much.  He seemed good and was able to maintain a good mood and normal activity for bed tonight.  He's going to want juice in the morning and I didn't tell him that he won't be able to have anything to eat or drink until after the test is over.  That will be the biggest morning obstacle before we leave the house at 7am.  I feel bad for my sweet boy having to go through all of this but I know he will do fine.  I just hope they have some valium for me!

I have some really funny stories to write about Isaac and Jerry but need some sleep now.  Hopefully I will get to them soon after the update about tomorrow.

Tuesday, July 24, 2012


Got Isaac in to see Dr. Mehta today!  So elated to find out that everything looks fine!!  As I thought, the EKGs can be inaccurate especially in kids.  Isaac has a 3rd heart sound which is normal in some kids and all his measurements for his heart are within normal limits.  Dr. Mehta will recheck  him in a year because of his symptoms and family history but believes that Isaac is fine.  He thinks that Isaac's symptoms may be from his asthma.  I am so glad that is over with for now!!

So we still have to deal with the hormone growth test for Jerry and then take Isaac to the endocrinologist for his lack of growth this year.  On to these next things....

Thanks to everyone for sticking with us and praying for us through this situation with Isaac!

Saturday, July 21, 2012

getting by...thankful for fun days!

First...I keep finding really bad mistakes/typos in my blog...like hear for hair.  They changed the whole blog system and I can't figure out how to get to my old posts to edit them.  Driving me crazy!

Today John played in the yard with the kids while he cleaned the grill.  I packed for a picnic and we went to the metroparks and cooked out on a charcoal bbq grill!  We went hiking and played by the water.  It was great fun.  The boys are really into birds right now thanks to my mom!  We saw a woodpecker and that was really exciting.  Jerry thinks EVERYTHING is a bald eagle!  We brought bikes but had no time really for that.

I told Isaac that the test showed his heart might not be beating quite right so he is going to have an echo...like he watched Jerry have several times.  He said "oh, okay, I don't care."  He is so hard to read.  He could really not be thinking of it or he could let me know in a few days that he has been really worried about it.  He is making me so nervous when he is running around  now.  I kind of was even wondering if he is trying to show me he is fine.  He seems to be calling attention to the fact that he is running around...that could not be though...not sure.  I told him to always stop if he feels too tired or his chest hurts and to always let me know. Other than that I am not really restricting him.  With most heart disease and little kids it is assumed they will self regulate and stop on their own when they are tired...which does seem true with Isaac and Jerry.  I am not overly worried that it could be to bad because his appetite is great, he has good color, and generally he feels pretty well.  Of course I know so many stories of kids with no symptoms who were actually in pretty serious condition too.

Tomorrow we have tickets for the Indians game.  The boys are supposed to wear their baseball jerseys and they get to run around the bases and be in a parade around the stadium.  We are going to do our best but it is going to be really hot!  We will have to be kind of careful for both of my boys.  Thanks to everyone checking in with email.  It helps a lot to know you are all thinking of us.

I pray this all turns out to be a big false alarm with Isaac's heart.

Friday, July 20, 2012

Isaac's EKG

Yes, ISAAC'S EKG.  Never thought I would be writing about that!  With much anxiety, I am posting about Isaac's abnormal EKG results.  Finally got the results today.  I knew it would be bad news because yesterday was our pediatrician's day off and the other doctors in the office wouldn't "give me the results because they didn't know Isaac's history."  I said "they can't even just tell me it's normal?" and I didn't get much response from that.  So Dr. Lim told me today that it showed an irregular rhythm and probable enlargement on the left side.  I still feel like this can't be happening.  Also I just think it could be a mistake because pediatric EKGs can be confusing.  Working on getting an appointment now.  All of this on my mind and still Jerry's horrible growth stim test coming up.

I planted the seed with Jerry about his growth problem.  Poor kid...we are always telling him to eat this or that or more and he will grow.  Now I have to tell him he has to go through this awful testing to find out why he's really not growing.  I told him the doctors are trying to help figure out if something is missing in him that is supposed to tell his body to grow.  He stopped what he was doing and said "Wait a minute....are you telling me I have to get a shot?  Do I have a check up today or not?"  All that with such seriousness.  I promised him I would tell him whenever something was coming up and left it at that.  I also told him he is doing a good job eating so something else must not be quite right.  He went back to playing and said "I'm going to be really big like Isaac!"  Little does he know that Isaac may have the same problem!  Hopefully more news and better news soon about Isaac's little heart!

Wednesday, July 18, 2012

Jerry and now Isaac...update

Realize that I kind of left the end of my last blog in a weird place.  To finish up, I brought Isaac today for his heart type symptoms and to follow up on the growth.  He will have a chest x-ray and an EKG this week and also a bone age x-ray for the growth problem.  I will call the endocrinologist for an appointment for him and he will probably have the same blood work jerry had to start out.

Jerry has that horrible growth hormone stim test on the 31st.  NOT looking forward to that!  This just all seems surreal...all of this going on with him and with Isaac.

Both boys are just so funny and it is so good they keep us laughing through all of this!  Despite all this too, we are trying to make summer super fun!  The outdoor adventures are all so close to here and the kids love the beach, hiking, and water parks!

One thing that we are missing a lot right now is Nonno (Grandpa), John's Dad.  Otello Sacco passed away during a nap on Easter.  He was not feeling well for a day or so and stayed home from the Easter party and my sister and law's.  We were calling and checking in with him and he was pretty much fine, just tired with a slight fever.  Then we couldn't reach him.  John went to the house and found him.  He did CPR but it was his time to be with God.  It is believed he had a heart attack.  We are thankful he passed in peace without any suffering.  He was 83 and still walked a few miles most days.  He worked as a barber (even the day before he passed) and cut the grass.  We miss him but are glad we were here in Cleveland to have some last wonderful memories with him.

Isaac seems to understand the basics of dying and such especially since my dad passed in 2009.  Jerry has been trying to figure it out and has the normal concerns for who else is going to die.  It breaks my heart.  One of the first things he said was "Nonno can cut my hair when he gets back from heaven."  The other night we saw a bright triangle of sky in the middle of a dark stormy sky (ended up with tornado warnings).  Later Jerry said, "I know that triangle light we saw was heaven...I just know it!"
All that was written a week ago or so.  Was saving so that I could add photos but....ughhhhh no time!  Seems so busy.  We have been doing a lot of fun summer things and when we are not occupied the boys are a handfull and wear me out!

Anyways, Isaac had his testing done.  I have heard that the x-ray was normal but have not gotten the results of the EKG yet.  The pediatrician's office said they will check into it further if the results are not in by tomorrow.  If that is normal we will just watch and see if the somewhat poor endurance and complaints continue.  If there is something that shows up I am sure he will have an echo right away.  The bone age showed correct for his age.  We would hope it would show a younger age meaning he could have just hit a slump or will have room to catch up that growth he missed.  With Isaac he is still in the 30th percentile for height so it is not like he is super short for his age but it is a little concerning that he is gaining so much weight but not growing any taller.  He gained 2 pounds in about 2 weeks.  Having this go on with Isaac now too just makes this all seem so strange...this can't be real that we have all these different things going on.

Jerry has that awful test coming up and I just panic when I think about it.  I just can't imagine how I take my feeling well 4 year old and explain what we are about to go do.  If he was sick it so much easier to make an explanation about it.  It is going to be really rough and I just wish so bad there was a way out!

Saturday, July 7, 2012

IGF1 results

Jerry's labs for growth hormone showed super low results.  This means that the hormone that is produced in the pituitary gland sent to the growth plates to tell the bones to grow is not being produced or not getting to right place.  I may be a little off as I am still trying to understand this all, but that is the gist of it.  The next step is another test called a stim test.  It is an awful 5 hour procedure with an IV, shots, and blood tests ( I think done through the IV).  They will give him injections of medication to see if they can stimulate his growth hormone.  If they cannot get it to reach a certain level then they will be sure he is not able to produce it.  If they do get it past the designated level then it is a bit of a mystery as to why it is not being stimulated naturally.  In either case, if they cannot find another cause, he will be prescribed growth hormone injections.  As we were going into this I was thinking maybe we don't care if Jerry will be really small and maybe we wouldn't agree to this treatment.  However, I have learned more about all of this and found out that there is a lot more to it.  This hormone is what keeps all of your organs strong and working well, keeps your immune system functioning, and gives you an appetite.  There is even evidence that this hormone can help when given to people with heart disease and failure.  There is still a lot to learn.  Jerry will also need to have an MRI of his brain to check his pituitary gland for tumor or malformation.  I am not sure how that will work out because he may need sedated and that will possibly be a risk for his heart.

Okay...so on top of all that with Jerry...Isaac showed no growth so far this year at his 7 year check up.  His last formal measurement was in September so he still has a few months.  Kids should grow 2 to 2 1/2 inches each year.  I was kind of shocked about Isaac but then when I thought about it...we really haven't changed his shoe size and he hasn't really grown out of any clothes!  I know that at the end of the summer last year he had a growth spurt because it was in Oswego and one week I could barely open the freezer door over his head but two weeks later he got clunked right in the head with the freezer door.  Sometimes the growth hormone disorders are hereditary but not always.  We will be checking on Isaac and probably start the same testing if he does not grow by September.  Also with Isaac, he has on and off complained of being tired and having stomach aches and extreme thirst when he is active.  During soccer in the fall he complained kind of a lot about feeling tired and his stomach hurting.  He told me it hurts every where from under his neck and in his belly when he is running.  I thought maybe from his asthma and also maybe like an acid reflux.  You have to understand with Isaac...it is really hard to tell with him sometimes if it is real discomfort or if he is feeling upset thinking he is not doing well at his sport.  Also, it is inconsistent.  The other night however, we were walking to fireworks and he got pretty upset saying that his chest was hurting and he was really tired of walking.  I felt his heart and it did feel like it was pounding even though he was not seeming out of breath.  I still really think he has got to be fine but will bring all this up with the doctor next week.  Jerry's heart condition does not increase the chance that Isaac will have the same thing but slightly increases the chance of family members having some other type of heart disease.  Isaac had a an EKG that was normal when he first turned 3 and the one chest x ray he had a few years ago for a cough did not show an enlarged heart.  Those are good signs but things can change.  He also has frequent headaches and said his head gets worse and he gets dizzy when he stands up.

Thanks Karen and Sue for your notes and for friends checking in with email.  It helps to know that so many thoughts and prayers are always out there for us!!

More soon....