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Friday, May 29, 2009

Round Two.

The catherization went fine, Evan did great. They found that his pulmonary pressures are at about 70 % of his blood pressures. They also found his lung resistance was a little high. I'm still figuring out what that exactly means, but basically his lungs aren't relaxing like they should. End result, is Evan needs surgery within the next couple of months.

Good news, the ECHO does show tissue around his mitral valve. There's a good chance that Dr. Devaney will be able to scrape that tissue away and allow more blood flow through the valve. He also may be able to work with other, regular tissue to manipulate it some. However, the end result of that could be too much leakiness which would also mean a new valve.

I may have more news next week, but based on working with Dr. Devaney before and what we heard today, he won't really know what he'll do until he's in there and is able to see the valve and surrounding area. The last surgery only had him on the right side of his heart, so he has not seen his valve at all. News next week should be at least a surgery date. At some point, hopefully next week, we'll have a phone consult with Dr. Devaney and can learn a bit more about what the surgery entails. We do know that regardless, it will be another open chest surgery.

Not the news we wanted, but as with all things, we know this was not a surprise for God. Evan is the same as he was yesterday, and now we are fortunate to know these things and do something about it. Dr. Devaney may not know what he's going to do when he opens Evan up, but God does. He knows the result of it all. We have trust in that and continue to leave our trust in Him.

Our prayers worked before and God worked a miracle. We urge you to continue to pray. Both for Evan, and for Derek and I as we coop through this. Evan won't remember any of this, which we are so fortunate for. We'll keep you updated as we can.


Evan is in having the catherization done right now, went back a few minutes before 8 and it could take up to 3 hours. We met with his Dr. right beforehand, and learned what they'll be looking for/the possible scenarios.

1. Some of his ECHOs from his local cardiologist showed what may be evidence of a supra ventricular ring above his mitral valve. Basically a ring of tissue that is above his valve. If this ring is there, and is causing the backup, it's a more simple fix than replacing the valve, they would just have to scrap it. They won't be able to tell much about this ring during the cath, it's better seen from his ECHO. If needed, they will do more pictures to see this clearer.

2. The big thing they're checking is his pulmonary blood pressures. They really want to know the pressure of his left atrium (upper left ventricle). There isn't a path the cath can take there, so instead the read pressures in the right atrium and balloon into his lungs. This should give a good estimate as what his left atrium is at. There's a small chance, this reading wouldn't be accurate, if that was the case, they would use a needle through his septum to get an actual reading. There's more risks to this, so very unlikely. if they did do this, they would be able to check on the status of having a supra ventricular ring.
So, when they check the pressures, 3 options:
- if pressures are 1/2 or lower of his regular blood pressure, all is good. We can hold off on any surgery.
- if pressures are close to or at his regular blood pressure, surgery is needed. What that surgery entails, TBD.
- if pressures are between 1/2 - 3/4 of his regular blood pressure, it's a judgement call where they'll get consults with Dr. Devaney, his surgeon from his first surgery.

So, now we wait. In regards to deciding on surgery (pending that scenario), final decisions wouldn't be until next week. Dr. Devaney isn't in today for a consult. But even if his pulmonary pressures are very high, what surgery looks like isn't known, and may not be known really until Dr. Devaney begins the surgery. There's only so much they can tell without actually looking at it. It could be a replacement, or he may be able to manipulate some things to cause better blood flow.

UPDATE: Our nurse just came out, no news yet, but all is going well. Access was easy, they're checking pressures right now. The actual cath should take another 1/2 hour, then Dr. will write her notes and come talk to us.

I'll update when we can

Saturday, May 23, 2009

here we go again...

The date is set, we're heading to Ann Arbor Thursday morning for 2 days of testing. Thursday will be getting Ann Arbor up to date with their tests that are fairly common for Evan - chest x-ray, EKG and ECHO. One difference with this ECHO is Evan will be sedated for it so they're able to do a thorough job without him wiggling around too much. Friday is the big test - diagnostic catherization. They will enter into a blood vessel in his groin and snake it up into his heart. Once in there, they will measure pressures, take blood gases, blood samples and take pictures with a dye. It's a 2 hour procedure, we'll have to stay 4 hours afterwards for recovery. They did confirm that the doctor will be able to talk with us about results that day after the procedure. I'm very happy we're not going to have to wait to hear.

So, that's about it. I just wanted to post an update to give the details of our week. Specific prayer requests are that one, what they see shows that we can wait on the valve replacement. and two, that whatever they see gives a clear indication as to what we need to do now. I'm hoping that Derek and I are not put in a situation where we need to make decisions without having a clear cut answer as to what that decision should be.

I'll update next weekend with the results of the test. Prayers welcome and highly encouraged. :)

Tuesday, May 12, 2009

an update on Evan's heart

We had a cardiologist appt this morning with Dr. Loker. His main concern has been his parachuted mitral valve - this has been really Evan's only issue since his surgery last June. Basically, because of the abnormal shape, it's causing stenosis of the valve. Which means it's not allowing adequate blood flow between his upper and lower chambers in his left ventricle. With this backup it causes a back up into his lungs.
His ECHO today showed that the stenosis is still moderate to severe. The result of that, at this time, is an elevation in his pulmonary blood pressure. What should be around 20-25 is in Evan at 45-50.

At this point the Drs are wanting some more information, so Evan will be having a diagnostic heart catheter done in Ann Arbor within the next couple of months. We have known that the mitral valve would likely need to be replaced in his lifetime. We now know it's not an 'if', it's a 'when'. The hope has, and continues to be, to hold this off as long as possible. Putting a mechanical valve in has a couple of ramifications: One, being non-organic, it is not going to grow as Evan's heart does. The earlier it's replaced, the more often it will need to be re-replaced as his heart continues to grow. Each valve replacement will be another open heart procedure. Two, because it's mechanical, blood tends to clot around it. Obviously we can't have this in his heart, so he will need to be on blood thinners. Being on blood thinners means a lowered activity level for Evan as it will be very important that we avoid him getting hurt.

Our prayer continues to be that his valve replacement can be postponed for at least a few years. I won't have any idea on what timing the Drs are thinking until after his cath is done. There's a chance that during the cath, they can help his stenosis a bit to delay the inevitable. God has certainly worked miracles in Evan's heart already, I pray he chooses to do that some more. I know we have so many people who have continued to pray throughout Evan's first year and I thought this would be a good way to get you updated.

For now, we wait. Worry does no good and while we have more information today, Evan is still the same as he was yesterday. None of this has been a surprise for God - he already knows the result of the catheter we wait for. He knows when Evan's surgery will be. It's in His plan, so we continue to trust. So, instead of worry, please continue to pray, and enjoy these irresistible photos of our little man...

Sunday, May 3, 2009

warm weather, grumpy baby.

I took Evan out to play outside since it's finally nice outside. Evan didn't think it was as much fun as I did, but it did make some good photos!