Happy Birthday!

We just celebrated Tommy's fourth birthday.   We are so blessed. Simply the fact he had a fourth birthday is a blessing from the Lord. To be breathing on his own is more than we thought possible. 

One of the many blessings on his birthday was a cake through Icing Smiles. They are an organization that arranges cakes for children with life expectancy issues.  John of J.W. Desserts donated his time, talents and supplies and made this amazing train cake for Tommy.  John is an incredible cake maker with an impressive resume. The cake tasted as good as it looked. Everything on it was edible. All the decorations were real chocolate and inside was a delicious lemon cake with filing.  At first Tommy thought it was real and he should be able to play with it.

Look at all the amazing details.

So Happy.

Still having trouble believing it's a cake.

Candles.

Candles on his cake is actually a very big deal. Until a month ago our house was taken over by oxygen tanks and equipment everywhere.   He couldn't be by any open flame at all. When birthdays rolled around in our house we either had no candles on the cake or just a few no matter what your age, because of all the oxygen tanks ect around.  It was such a blessing to put four candles on his cake and light them up and let him blow them out.

New train tracks.

Thank you to everyone who helped make this birthday so super special for Tommy. It was very appreciated and we will never forget it. From Icing Smiles and J.W. Desserts to Grandma, Grandpa, cousins and Auntie, we love you all and Tommy sends a huge thank you.

Sincerely,

Grace

We are blessed

The long awaited update!!!

Going into the heart cath, the doctors didn't seem to optimistic about being able to help Tommy's heart. His saturation levels had continued to decline post fontan and they didn't know why. We were told to hope for venous collaterals to coil off, there was more blood flow through his fenestration, indicating higher pulmonary pressures. When they got in there, he had no venous collaterals that they could coil off and his PAVM had started to improve. Those can take a couple of years to improve. With seemingly nothing to be able to do, they decided to test occlude his fenestration. The doctor simply held it closed during the cath for a few minutes. Right in the cath lab, they observed his saturation levels raise dramatically. They checked out a couple more things based upon closing his fenestration and decided right then to permanently close it.

Cheering up with a new train.
Waiting for the cath.

 Fenestrations are generally put in place during the Fontan to help control high pressures. They are like a pop off valve.   Increased pulmonary hypertension is a side effect of no fenestration.

I think his smile says it all.

 We have a new boy.  At first he didn’t want them to even take off his oxygen tubing. I think he associated it with feeling better.   He had lots of blood work done during his cath for the orthopedic doctors in charge of his brittle bone disease.  I still need to talk with them and get the results.

Resting

 We asked what’s next for Tommy.  In a perfect world for Tommy, with absolutely no complications, heart only (we didn’t ask the OI doctor) he would see the heart specialist ever six months, with a cath every few years.  Until he is about ten or eleven and then they just don’t know.

Getting help going over a tree trunk.

 God has given us so much more than we even asked for. We never dreamed Tommy would be able to come off of oxygen.  It is truly a miracle. 

So happy!

Thanks for all your prayers!!! It is what made the difference.

Sincerely,

Grace
ps-he is sating anywhere from 87-94 on room air!!!

Coming to you all with another request

Faith has a mommy and daddy waiting for her. She has a family that loves her and longs for her to be home.  My request is for us to rise up and help her family bring her home.  The adoption community is wonderful, I know from first hand experience. My son is alive today because of the prayers of many many people. Faith needs many many prayers herself. She is a precious jewel in Gods and her families eyes.  A jewel that has been forgotten by the world around her until now. Her life has been a miracle so far. Simply the fact she is still alive is a miracle. Let us help her family bring her home.

Please go to her momma's blog, read about her, and donate to bringing her home.

Thanks so much,
Grace

Quick update

Sats in the 90's!!!!!

Tommy came through his heart cath very well. The drs decided to close his fenestration and he is now sating in the 90's on room air. It is amazing.  We have so much to thank the Lord for.

Thank you everyone that has been praying for him.  These sat numbers are a miracle.

Sincerely,
Grace

Leaving in the morning...

We are leaving sometime tomorrow morning to head over for Tommy's heart cath.  We are going over a day early. Check in at the hospital is at 7:15am.

Please pray that all goes well. Please pray the low oxygen issue is something that can be easily fixed in the cath lab.

Thanks much!!
Grace

Latest....

We have been waiting on Tommy's heart cath. It is scheduled for April 2nd.  The plan is to admit him overnight. He sprang an artery leak with his last cath, which is an extreme emergency situation, so we are taking no chances.

Brother and sister on the Make-A-Wish trip.

He is still requiring more oxygen. We are almost double the tanks he goes through in a week. We checked into liquid oxygen, but declined it. Liquid oxygen is purer than a concentrator and a little bit better than the tanks. But, you have to be careful with it, the holding tank can get soo cold it will burn a person and the little carrier thing can't be turned anyway but up. So, with five kids and two dogs in the house, we'll stick with tanks. He needs turning up to 2L sometimes now.  The airflow bothered his nose at first but he is used to it now.  He isn't supposed to go over 2L.

Being a baker man.

To put how he is doing in perspective. Right after his open heart surgery in July, he was sating at 87/88 on .25L. He is now sating 82/83 on 1.5L and goes lower with activity. He also has raspy breathing now.

Disconnected him from the O2 for a couple of minutes
so he could go down the slide.
His smile says it all.

We found out he does need glasses, but they decided not to have him wear them because of the oxygen tubing on his face. He also had appointments with the orthopedic doctors about the brittle bone disease.  Since his heart is taking precedence right now, they are not going to do anything either.  They will run some blood work during his heart cath.  If he breaks a bone for any reason they are to be notified, but they will see him next after his heart and lungs are stable.

Please pray whatever is wrong is simple and can easily be fixed in the cath lab.

Thanks,
Grace

Doctors Appointments

Normal, was the result of one of the tests Tommy had this week. This is not a word usually associated with his tests results. He had a hearing test and his hearing is normal!!!! His hearing was tested at the request of his orthopedic doctor.  Children with bone and collagen issues can lose their hearing over time, so his doctor wanted a baseline test.  Practically cried when they said normal, generally words like complicated, complex, mystery and puzzle are used.

Loved getting pulled in the snow.

His heart function is essentially the same as it was in Oct. Thankfully it really hadn't declined anymore. The big challenge continues to be the decline of his lungs.  The cardiologist is going to be talking with a pulmonary expert about some medication trials to see if they would help Tommy.  Any of you parents with kids with pulmonary hypertension have your kids on Atenolol(Senormin/Tenormin)? Apparently there is some reasearch that Atenolol might also help shrink Pulmonary Arteriovenous Malformations, thereby improving oxygen saturation levels. Tommy has PH and PAVM.

He had a lot of fun in the snow, but can only be outside for
about ten minutes before he gets too cold and
sat levels get way to low.

He will be admitted for a heart catherization in about three weeks. This will allow the doctors to really see what is going on with his heart and lungs. There is a possibility he has formed some venous collaterals that might need to be coiled off.

Thanks for all the prayers. Keep them coming.
Sincerely,
Grace
ps-My blog is open again. Blogger limits the number of people that can follow a private blog.  When I have time, I will be changing my blog to a way it can be more private and still have people read it. Thanks for your patience.