What a crazy couple of days in the hospital! Nathan has done really well this time, and the best part is that the doctor DID NOT have to redo his nissen! He told me that this has happened only a couple of times (2) in the past 5 years with patients like Nathan and that he has had do a couple of hundred of them.
Anyway, Nathan is home and doing well. We got home yesterday afternoon and as soon as Ellie got home from preschool, Nathan was SO EXCITED to see her. He was happy to see Dad, but Ellie is the main focus in his little world. He kissed her several times and giggled as he tried to chase her. I don't know if we'll have more children or not, but there is a pretty special bond between Ellie & Nathan. Nathan just adores his sister.
As far as the echo went, it did get done and the results were read to me yesterday. Nathan's heart has gotten a little bit bigger than last time in the right ventricle, the pulmonary valve is pretty leaky, and now his tricuspid valve is also leaking. The tricsupid valve is likely leaking with the change in pressures from the right ventricle. The tricupsid valve issue is not an original defect in his heart and has been added to the Tetralogy of Fallot issue. The echo report stated that Nathan has severe pulmonary insufficiency.
Cardiology said that I have to remember that Nathan's heart is "fixed" to the extend that they are able. This does not mean that problems don't exist anymore. Its just going to be a life long issue that is not going to magically go away (as much as I would like to). Still, its hard to read those words: SEVERE PULMONARY INSUFFICIENCY.
I need to make a call to the sleep doctor's department (Dr. Daftery) to see if there is anything in addition to the oxygen that should be done for Nathan. I'm a little nervous to make the call because the doctor's always seem to find just ONE MORE THING.
We appreciate the thoughts and prayers for Nathan this week. This has been one of his best surgeries to recover from. In the next day or two I'll have to download the pictures showing Nathan's coping mechanisms in the PICU and the cute puppy that came to visit him again the in the hospital.
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Nolan the Soccer Player
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On the advise of Nolan's pediatrician and teacher, we decided to sign Nolan
up for Soccer. He really seems to enjoy it, but only on his terms.
Practices ar...
13 years ago
4 comments:
So glad things went well! Nathan is a strong boy. P.S. Our little guy has the same problem with repaired ToF and now severe pulmonary insufficiency and tricuspid regurg. Not exactly what we would have hoped for, but what can you do. Best of luck!
Nathan go by without the Nissen redo? Whoo Hoo! Pulmonary insufficiency and leaky valves too huh? Poor Nathan.... I sure hope that the sleep docs let him catch a break. You guys deserve a nice boring winter!
So good to hear that all went well!
I can't imagine how hard it must be
to have Nathan go through all that he has. I hope all continues to go better for him.
I'm so glad to hear that he is doing well and has recovered well.
That is so cute that Nathan was so excited to see Ellie. I love watching Maryn and Blake play now and interact together.
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