Monday, February 25, 2013

Day 25 - Tommy

September 13, 2010 He became my son!
Walking up that staircase, lots of other families, babies crying, hot, nervous, where is he!  A curtain stood in for a door on the side of the room. Walking over I craned my neck to see if I could catch a glimpse of my new son. Seated on a nanny’s lap was a concerned looking little guy, my son!!  The nanny handed him to me and with that transfer my heart was lost to him forever and always.  I am a heart mom and he is my son.

In China, we noticed that Tommy seemed to be bluish. We had heard about that happening to heart children, but had never seen it firsthand.  I was thankful I had made an appointment with cardiology before we had left on our adoption trip. I felt I was going to need the reassurance Tommy was working well right away.  We knew what his heart defects were after all we had paid to have his file reviewed. Our adoption trip went fairly smoothly, we had brought along all of our other children and that was a blessing. We had adopted from China before and knew what to expect.

At Tommy’s first cardiology visit at home, we found out his diagnosis was actually different than was originally thought.  Tommy has tricuspid atresia, pulmonary atresia, atrial septal defect, ventricle septal defect and mitral valve regurgitation.  He has a single ventricle heart.

He seemed to be doing pretty well, so we got to come back in a few months. During this time we had also taken him to our local international adoption doctor where he was diagnosed with rickets from malnutrition, which I thought was rather strange since his orphanage had the nutrition sponsored by Love Without Boundaries, a wonderful organization.  He seemed to be declining and not breathing as well, so he was scheduled for a heart catherization in December 2010.

The results of his heart catherization was unexpected, it showed Tommy had formed pulmonary arteriovenous malformations in his lungs, a rare side effect of having a bad heart. He would need his fontan operation sooner rather than later.  His case file was presented to the surgeons and he was declined for surgery as being too small.  We went home with instructions to pack pounds on him.

Since he seemed to be doing well and there was a lull in doctor’s appointments with his heart we decided to follow up on getting his rickets and nutrition resolved. Rickets would have been nice, Tommy does not have rickets, in addition to his heart problems he also had osteogenesis imperfecta commonly known as brittle bone disease. There are several type of brittle bone disease and he seems to have a mild form.  Tommy has pretty much all the side effects without lots of broken bones. Yes, it does make his heart issues more complex, for example his chest takes much longer to heal than if he didn’t have OI.

During this time, we noticed a rapid decline in both his energy level and his saturation level. According to the cardiologist Tommy declined in two months what they thought might take a year. He was presented again for surgery and again turned away as being too weak.  We and our cardiologist decided to seek out other opinions from top pediatric cardiologist hospitals around the United States.  We became Boston bound in June of 2011. By this time Tommy had been on continuous oxygen for months already.

Boston is an amazing hospital, but thousands of miles from where we live. Tommy started with a heart catherization a few days before his big surgery. In true Tommy fashion he had complications with the catherization and sprung an artery leak right in front of us. Never ever again do I ever want to see that.  Lots and lots of coils were placed in the cath lab. His chest x-ray looks like a maze of wires. Putting in words the feelings going into his fontan is hard.  We had been told he wouldn’t make it through the fontan and here we were carrying him into it.  Prayers, prayers and more prayers is how Tommy got through the fontan. Yes, there was complications, he coded, needed blood transfusions ect. but when all was said and done, he did amazing!! By the end of July we were home again.  Tommy was still on continuous oxygen.

At his checkup in October 2011, Tommy had again declined. The cardiologists were stumped. We were told to go on his wish trip in December, forget about the medical and have some fun as a family.  Tommy continued to decline. His lungs were a huge issue.  We kept needing to turn up his oxygen flow rate to keep his saturation levels in an acceptable range.

April 2012, Tommy had another heart catherization.  During this cath it was discovered the fenestration that was created during his fontan was the problem. His fenestration was permanently closed and Tommy was able to breathe on his own for the first time in over a year.  We have so much to praise the Lord for!!

Increased pulmonary hypertension is a side effect of a closed fenestration and Tommy is experiencing that. He is currently on medications to lower his blood pressure to help his lungs out and take the load off of his heart.  At his last checkup he was considered stable. For how long, we have no idea. We were just overjoyed that for this last appointment he was considered stable.

The above is my son’s medical in a very small nutshell.  Tommy is so much more than his medical.  He is cute and adorable. He is the reason there are toys all over the house. He is the big boy showing us his big muscles. He is the person I ask if I need help with the Ipad. He is my dancing in the kitchen partner.  He has the widest smile. He is an amazing people person. He sings Jesus Loves Me.  He is proud of sleeping in his big boy bed.  He thinks he can beat me at Connect four and he really does beat me at Candy Land.  To us, Tommy is perfect in every way and each moment with him is a blessing.



KHM said...

Ahh. Love your boy. You post reminded me that we kept washing Joie's hand in China thinking she was dirtly. Eventually we realized we had poor lighting - her little hands were blue.

Bad Mama.

Betsy said...

Grace, what wonderful words about a wonderful boy! Thanks for sharing --Betsy, mom to Annie from Shantou , Bethany from GZ and Jack from Hefei (also with CHD)

Betsy said...

Grace, what wonderful words about a wonderful boy! Thanks for sharing --Betsy, mom to Annie from Shantou , Bethany from GZ and Jack from Hefei (also with CHD)

Janet Lucas said...

Oh my goodness, Grace. Tommy is so adorable. My thoughts are with him and you.

Janet Lucas said...

Tommy is SO adorable! My thoughts are with him and you.

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