Surgery Consult Info.

Noon

Well, everything is going okay so far. She had an echo that took a very long time. Nothing significant was really discussed. That particular doctor agrees with Harlie's heart surgeon that the subaortic stenosis does not need to be operated on at this time. He mentioned that it appears that the VSD (which NEEDS to remain open) is narrowing slightly as well. But, again, just watch closely and hopefully we'll get to the Fontan (a year away I'm guessing) before anything needs to be done. So, that is good.

At 11:30 we had the perfusion study. That was a bust. They said they got some info, but it was difficult due to the trach. I have to run, will write more later....

9pm

Well, we are home. Overall, the trip went well. I must admit, Tom and I had our doubts that we would accomplish anything after the perfusion study. In about 20 seconds they said she didn't have congenital lobar emphysema. And you should have seen the study - it was chaos. They didn't know she had a trach, there was a lot of running around and trying to make things work with her trach mask and oxygen. They tried twice.

Basically, they put some radioactive gas in a syringe and then squirt it in the mask. As you breathe it in, they take pictures and it shows up in your lungs. The first attempt, they got one picture before the gas disappeared. The second attempt, it never even got in her lungs. I think he didn't time it with her breaths. She was probably exhaling when he put it in.

Needless to say, I just can't put a lot of stock in the results. So, then we went to meet Dr. Sandler. The waiting room was FULL and crazy. So, I stayed in the hall (luckily there was a chair out there, so that's where Harlie and I camped). Tom went in to sign in. He said there were 6 people down for seeing Dr. Sandler for 2pm appointments! UGH! So, we waited for about 2 hours. We were prepared to leave with no new information. But, to our surprise, we really liked Dr. Sandler. He didn't rush us at all and we felt like he really listened to what we had to say. I won't bore you with the details, so I'll do my best to give you a brief summary.

No one knows if this surgery will make a difference in Harlie's lung function or comfort. She is on O2, and works really hard to breathe. The theory is that this surgery could help get her off O2 and make her body work more efficiently. But, they don't know. One interesting thing - he noticed immediately that she has tracheolmalacia. I told him that I thought it has gotten worse (and I just found out about it a month ago!). He said that is how it works - it gets worse as they become more active and need more air, before it gets better. So, maybe she's "normal" for once!

Anyway, is her heart causing her issues? Is it the worsening tracheomalacia that is causing her issues? Is it her lungs causing her issues? Hmm... or a little of each?? My feeling was that we could go around in circles forever, over-analyzing each issue to death - or we could start making some changes and hope for the best. The bottom line is that the "dead" lung tissue isn't doing her any good. Odds are that if it isn't causing the problems now - it most certainly will at some point. So, why not take it out now, with the hopes that it helps? The surgery itself is no more dangerous than her heart surgeries - less even.

So, the plan is to move forward with the surgery. He said it will take him about 2 weeks to get with her heart surgeon to get his blessing. And then surgery will be in August. Oh - I forgot to mention that today's echo was not discussed with Dr. Sandler. And her cardiologist in DC was on vacation - so she needs to get back and discuss it with them. There is still one nagging issue - there is that blood vessel going from the heart to the bad lung. They need to have a plan - just in case. So, we wait till we hear from him. UGH! But, at least we sort of have a plan now.

He is going to plan it so ENT can get in there while she's under to do a more thorough examination on her trachea (and put a tube in her right ear). If she can handle it, they will upsize her to a pediatric size (she's now in neonatal size). The pediatric ones are longer and keep more of the trachea open. Hopefully that will help her, too. He said he could also take out her peg g-tube and put in a mickey button. I will have to do more thinking on that one before making my decision.

We also discussed her anoperineal fistula. The surgery that would give her a better end result has a more difficult recovery and is harder to heal. And she would need a temporary colostomy bag while she's healing. Oxygen is really important in the healing process, so he said we should give her some time to get better and see if the lung surgery helps with that. Then do it next. If we don't fit this repair in soon, it will start to cause her problems. Of course, by the time we can fit it in, it will be RSV season.

So, all in all, we really liked him. We learned a lot. And we have a plan. With any luck, the surgery will go wonderfully, and it will help her. Well, that's it. Talk to you later.

Take care,
Christy