New Date!

[TommysMommy]

Tommy's LTP has been rescheduled for April 25th, with him being admitted the night before for IV hydration. Now to kick the butt of this flu bug and put him in that bubble for the next month!

[faywrayy]

Yippeeee!

[angelamclamb]

Yippeee! So after the surgery, what will happen then. Just curious in case Jonathon ends up needing it as well, but wasn't sure of the entire process.

[TommysMommy]

Originally Posted by angelamclamb

Yippeee! So after the surgery, what will happen then. Just curious in case Jonathon ends up needing it as well, but wasn't sure of the entire process.

This is called a 2 stage LTP, but I seem to count more than two stages with it! He're an abbreviated rundown on the steps.

1. Surgery...remove cartilage from rib area and use it as a stent in the lasered out airway.

2. After 2 or so week, stents will come out during a 48 hour hospital stay.

3. 3 + weeks after the stents are removed, he will have a bronch to check how his airway is holding up. IF it is good, then on to step 4.

4. Capping for 48 hours in the hospital. IF tolerated, then 30 days of capping at home during waking hours.

(possible heart surgery here first....)

5. Decannulation!

[angelamclamb]

Thanks for breaking that down for me. Jonathon's doctor said that his trachea was still a somewhat floppy right around the trach due to having the trach itself and he could be just fine and he thinks he will be, to be de decannulated, but the surgery Tommy is scheduled for is what Jonathon would get if he can't tolerate the floppiness. So now I have a better understanding, thanks a bunch!

Wow, it seems like a lot, but looking at the process I would think it would fly by quickly.

So what heart surgery does Tommy need? What heart defect does he suffer from? (That's why his sats are always low right?) Jonathon had transposition of the great arteries and had heart surgery at 7 days old. His heart was basically pumping in circles making his heart shape like a boomerang. Now fortunately he has no lasting heart problems and no scarring from the surgery itself, well, except the scar on his chest of course, but none from the surgery. He did have his thoracic duct knicked by the scapel and that caused a slew of problems until it was healed (Chylothorax) about 8 weeks later and a chest tube to drain the fluid off from around his left lung (300 cc drained from a 4lb baby).

[carolinec74]

sounds like April will be a great month for several kiddo's!!

Great news!

[TommysMommy]

Originally Posted by angelamclamb

So what heart surgery does Tommy need?

Tommy has a severe, complex defect. It's complete name is Double Inlet LEFT Ventricle, Transposition of the great arteries, Pulmonary stenosis, Ventricle septal defect, Patent ductus arterious and man-made atrial septal defect. It is usually shortened to single ventricle or DILV.



It means he has one ventricle (bottom chambers) instead of two. His right ventricle is very, very small, and his left takes up the slack. Both of the great arteries in his body dump a mix of fresh blood and unoxygenated blood into the single ventricle causing them to mix. They are reversed (transposed), but because they are dumping into the same chamber, there is no need to correct them. Pulmonary stenosis is the narrowing of the artery that carries blood between the heart and lungs. VSD is a hole between the two ventricles, but because his right ventricle is so small, the hole actually causes his right ventricle to not exist. PDA is the hole that supplies the baby blood from his mother. Usually it closes at birth. Tommy's did not and it kept him alive. An ASD is a hole between the atria (top chambers) of the heart. His surgeon put a small hole there so that he could more easily read his pressures in the right side of his heart during cardiac catheterization.

He needs a series of staged sugeries called the Glenn and the Fontan in order to live. As of now, he can't have them because he has pulmonary hypertension and the extra blood flow to the lungs that these surgeries create would kill Tommy. In the meantime, while we wait for his lungs to improve, his doctors put a tiny (4mm) shunt in his pulmonary artery to increase his blood flow. By no means is this a permanent fix. As his body grows, so does his blood flow. Usually within a year, his shunt will be too small, or full of scar tissue. He can get shunt after shunt until his lungs are in better shape, but he will never, ever have quality of life. He will remain blue and unable to oxygenate properly. So far, he's had two shunts. One at 4 weeks old (at 7 weeks premature, he wasn't even due when he had his first surgery), and again at 9 months old. He's due for yet another heart cath after his LTP.

[alizesmom]

Praying hard that Tommy stays healthy before, during and after surgery. Thanks for the explanation of his heart. Karen

[JWorthington]

April 25th is my birthday - it's gotta be a good day for Tommy!

Julie

[Ainsley's Mom]

Wow, that's pretty soon! Lucky you! Let me know where you find that bubble. I need one too. It seems the whole family is about to catch something. Right in time for our trip.