Yesterday Jake had his post-op check-up with his regular cardiologist down at TCH. He had his echo and EKG and then we talked with the doctor. In her words, she was disheartened by the results of the echo but "heartened" by how great Jake looked. The velocity by which they measure the turbulence of the blood flow across the valve has already increased in the past month which means the membrane has already grown. It was at 2.0 after surgery and yesterday it was 2.6. We were totally prepared to hear that as this is exactly what happened last time. Last time it grew quickly and then stalled out for about a year and then grew really quickly this winter which got Jake surgery #3 in March. So now we pray. We pray that it slows down dramatically or stops growing all together. We need Jake to get bigger and older before the next surgery so it will be easier to replace his valve. We don't want him going through what he just did for a LONG time (preferably never, but realistically we'll take a long time).
Good news: Jake has healed very well. He seems happier everyday and seems to be adjusted to the atenelol. His EKG looked good yesterday so Dr. Altman will meet with the electrophysiologist about the SVT from after surgery. She knows they'll want to keep him on the atenelol for at least 6 months and then will evaluate him. This is the medicine we have in pill form. I split it everyday and crush it up and put half in some pudding at breakfast and the other half in pudding at bedtime. He still refuses all liquid medicine...we're OK with that. He's gets to be difficult about some things if he wants :)
More good news: He is officially restriction free! We're gearing up for some fun! To celebrate today, we're going to have a picnic at the Waterway fountains and tomorrow Jake gets to finally go back to school just in time for his Easter party! Ty is off for Good Friday and Easter is my favorite holiday so we're going to have a great family weekend. I see bounce houses and more picnics and more Easter egg hunting in our future. He is also restriction free when it comes to activities. The doctor said he can run, jump, play sports, or whatever he wants. She said until the blood flow becomes moderately to severely restricted in his heart again, he can be "normal." Jake can pretty much pace himself and we'll let him tell us when he's too tired. We'll continue to watch the sweatiness with some caution but also we can just let him be a kid. We'll go back in August to see her and revisit all of it, but in the meantime...we're going to have a super FUN summer and have confidence that we'll have a great fall, too.
We were disheartened as well yesterday, but then when we see the joy in Jake's face, we can't stay disappointed/sad long. He has the sweetest disposition in the world and was just so excited to finish seeing the doctor so he could see his trains at the hospital. Praise God for our precious Jake.
Good news: Jake has healed very well. He seems happier everyday and seems to be adjusted to the atenelol. His EKG looked good yesterday so Dr. Altman will meet with the electrophysiologist about the SVT from after surgery. She knows they'll want to keep him on the atenelol for at least 6 months and then will evaluate him. This is the medicine we have in pill form. I split it everyday and crush it up and put half in some pudding at breakfast and the other half in pudding at bedtime. He still refuses all liquid medicine...we're OK with that. He's gets to be difficult about some things if he wants :)
More good news: He is officially restriction free! We're gearing up for some fun! To celebrate today, we're going to have a picnic at the Waterway fountains and tomorrow Jake gets to finally go back to school just in time for his Easter party! Ty is off for Good Friday and Easter is my favorite holiday so we're going to have a great family weekend. I see bounce houses and more picnics and more Easter egg hunting in our future. He is also restriction free when it comes to activities. The doctor said he can run, jump, play sports, or whatever he wants. She said until the blood flow becomes moderately to severely restricted in his heart again, he can be "normal." Jake can pretty much pace himself and we'll let him tell us when he's too tired. We'll continue to watch the sweatiness with some caution but also we can just let him be a kid. We'll go back in August to see her and revisit all of it, but in the meantime...we're going to have a super FUN summer and have confidence that we'll have a great fall, too.
We were disheartened as well yesterday, but then when we see the joy in Jake's face, we can't stay disappointed/sad long. He has the sweetest disposition in the world and was just so excited to finish seeing the doctor so he could see his trains at the hospital. Praise God for our precious Jake.
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