Difficult day...

**rebby** · January 11, 2011

This is an email that I sent out earlier to family and friends. Just wanted those who know me to be aware in case I didn't have your email... For those who aren't aware, Blake is my 9 month-old son.

Quote:

Blake had his echocardiogram this morning and, believe it or not, but we already got the results. As you may have guessed, having a cardiologist respond to something this routine, that quickly, isn't really a good thing.

It turns out that Blake has a combination of congenital heart defects. Congenital meaning that he's had these since his heart was first developed and that there was nothing that we could have done about either one. On the same token, these are issues that need to be dealt with.

The first defect is the fact that Blake never developed his main pulmonary artery. It appears that he did develop the primary artery to each lung, however they may not be joined or even structured like your's and mine. Due to the fact that the main pulmonary artery is non-existant, other arteries have been doing the work in it's place and Blake's blood-oxygen levels are much lower than normal.

His second heart defect is much more common, he has a "hole in his heart" between two of the ventricles. Ironically, because of the first defect, this is a good thing, at least for now.

The next step is a contrast CT scan to get a better look at exactly how Blake's heart, arteries and veins are constructed. This will give us a much better idea of exactly what we need to do to going forward. If an adequate picture can not be obtained via CT, a second procedure involving small cameras will be performed to get a look at things from the inside (a camera is inserted via a vascular procedure through his leg up to his heart).

Once the CT is complete and we know what we're working with, it is certain that Blake will be undergoing open heart surgery sometime in the next month or so. An initial surgery will be performed to fabricate a main pulmonary artery (very likely using donor parts from a cow). After we can confirm that this surgery is successful a second surgery will be performed to fix the hole. Additional surgeries may be required to fix other, semi-related, issues after that. Only time will tell.

Because of the exact type of defect that Blake has and how you go about fixing it, this is something that Blake will need continued care with for the rest of his life. The tissue used to create a main pulmonary artery is not living tissue and thus, can not grow with him. Obviously technological advancements will affect the degree of continued treatment so, at this point, there is no reason to speculate about the details.

Rest assured that this is a problem that Blake has had all his life. He, nor his body, know any different and he has grown and will continue to grow and thrive just as would any "normal" boy. For the time being, Blake has no special requirements or restrictions.

As with any cardiac procedure, this is quite serious. If left untreated, the seriousness of the situation would only be exacerbated. Obviously, this is not a problem that can be ignored.

At this point we simply ask for your prayers and a continuation of the love that you've always shared with all of our children. Despite the anatomical problems with Blake's heart, he is still a happy and healthy boy and there is no reason to believe that any medical procedures will change that.

Please let us know if you have any questions and we will do our very best to answer them. This is something that we just learned of ourselves a few hours ago so we still don't know very much about it.

Obviously not a good day in my household. Poor little guy.

April 1st -- Update in the 3rd post of this thread...

**enis750** · January 12, 2011

all the best to your little man Reb's

on a positive note (if i may) one of my good buddies had a similar surgery around the same age

has a scar on his chest like you wouldnt believe....but when he got older, he got a lot of sympathy from chicks and would always end up with a number!!!! hahahha!!!

just trying to put a smile on your face bro ;)

prayers for Blake

**rebby** · April 1, 2011

It's been a while since I've been around TST, for obvious reasons cited above. Anyway, I have an update for those who are interested. After a couple of additional tests it was determined that Blake has a condition called [url=http://en.wikipedia.org/wiki/Pulmonary_atresia]Pulmonary Atrisia[/url] with [url=http://en.wikipedia.org/wiki/Ventricular_septal_defect]VSD[/url] and [url=http://en.wikipedia.org/wiki/MAPCA]MAPCA[/url]. To summarize this basically means that Blake has no pulmonary artery trunk (from the heart to the right and left pulmonary artery), he has a hole between his right and left ventricles and he has multiple arteries that feed his lungs connected to his aorta (that should be connected to his right/left pulmonary arteries). Blake underwent his first open heart surgery on March 23rd. During this surgery 2 of his defects were addressed. The MAPCA's were our primary concern because when exposed to the higher pressures provided by the left heart chamber, these arteries will eventually close off (as a means of protecting your body from aneurism). If these arteries were to close, Blake would lose a great deal of lung capacity. Therefore 3 of his 4 MAPCA's were moved to the pulmonary arteries. The last MAPCA was very small and had proven to be redundant so it was clipped. The second defect to be addressed was his lack of a pulmonary trunk. To address this defect a aortic donation was used to fabricate a pulmonary trunk w/valve. This trunk will need to be continually replaced for years to come. Blake's VSD was left open at the conclusion of this surgery and thus his oxygen saturation levels remain in the upper 70's/low 80's. This was done to allow his heart to adapt to his new "plumbing" and to allow his pulmonary system to expand both naturally and artificially (due to his PA, his pulmonary arteries have not fully developed). Blake's recovery from surgery has been phenomenal. It's amazing just how quickly these kids recover from a major operation such as this. My wife and I spent the entire week in the cardiac ICU with Blake and, ironically enough, it was somewhat of an uplifting experience. I believe that this was due mainly to how well his recovery went. Short of a minor ear infection, Blake is already pretty much back to normal (yes, only 1 week removed from surgery). The next steps for Blake include a follow up with his pediatrician next week for some x-rays and just to assure that all of his external wounds are healing in an acceptable manner. Next month we will meet with his cardiologist to see how his heart is doing post-op. This should be a basic consult and will likely include a few x-rays and other basic evaluation. In May, Blake will undergo an intensive echo to see how everything is doing. Shortly thereafter we expect another heart catherization that will include some balloon procedures to help expand some of the narrowed pulmonary arteries. Both the echo and catherization will also help us determine the flow of the VSD and the difference between his right and left ventricle pressures. These pressures are critical to closing his VSD. Because of the difficultly in keeping people updated on this, we've gone ahead and created a [url=http://www.caringbridge.org/visit/blakerebelein]Caring Bridge[/url] page for Blake. Please feel free to stop by to get continued updates on Blake's condition. Any and all thoughts and prayers for our little guy are greatly appreciated. On a side note, things should slow down a bit as far as doctor appointments go for a few months. I'm going to give my golf season a shot this year but I have no idea how much I'll be able to play or even practice. One thing is for sure though, I'm going to do everything that I can to enjoy each and every round. Something like this really puts life in perspective. Golf should really be about enjoying each day, not getting upset about a bad shot or two. On the other hand, we got the statement for Blake's catherization earlier today, ~$36k. Here's hoping that insurance steps up to the plate in a big way. To date, we've surpassed $50k in statements but we have yet to receive a single invoice, go figure. I have no idea what to expect from his surgery/hospitalization (8 days in a cardiac ICU with 1:1 24/7 nurse coverage can't be cheap). :bugout: ETA: Blake turned 1 on March 31st. We made it home in time for his birthday!

**Stretch** · April 1, 2011

Really glad to hear he's doing well! All the best to you and your family Rebby.

**zeg** · April 1, 2011

I missed your original post, but I'm glad I caught your update. Very glad that things went well with the surgery, and it's awesome that you got to celebrate his birthday at home!

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