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posted Oct 8, 2010, 11:40 AM by Sean Molby
                ♥ HAPPY 6 month Birthday TRISTAN DRAKE!!
                                        WE LOVE YOU BABY BOY

Well, quite an eventful couple of days we have had. Tristan’s cath did not go as well as hoped. Again it took them over two hours to get a central line going, which they have to have to do the cath procedure, but they did eventually get one only to find that they were not able to do any interventional methods to reopen his left pulmonary artery. After a four hour procedure they discovered that his left PA is completely obstructed with no way to interventionally correct it. CRAP!! 


Back to the PICU we went, scared and worried about what was going on. There was much debate on whether to do a CAT scan or an MRI but do to scheduling the CAT scan is the route they went. Luckily they were able to get great images and know at least where the problem is located if not what is actually causing it. We didn’t get the preliminary results until later last night and we just now got the final.


The docs finally came in to let us know that they think that his left PA has either stenosis from his aortic valve (I think that is what they said) compressing it-however the surgeon suggested this is highly unlikely as there was a significant space between the two to prevent that from happening- or T has somehow developed a clot that has completely obstructed his blood flow through the PA-this is what they are leaning toward as it is the most logical. There may be some other scenarios out there but they have not disclosed/discussed them. These are the main two possibilities they are considering.


We asked why he has shown no signs of this and it turns out that T has compensated his lack of blood flow through his left PA by enlarging collateral veins that also go to his lungs and so he is actually getting blood to his left lung but not in the way it should be getting it and there is no way of knowing how long these collateral veins will last as they are doing work they are not meant to be doing. We now have more new signs and symptoms to look for and be cautious of to make sure that things are still going okay until next surgery


With this new info they now have to do another surgery. L It will be another open heart by-pass as they will have to go in and cut open his left PA so that they can remove any clot or stent it open if it is stenosis. We will have to wait another 2 weeks as it is not safe to do another by-pass this soon after his last one. L


Of course, his G-tube will now be postponed for at least 2 more months but they are going to let us go home until the next surgery. Since he has done so well at home since being discharged from last surgery they are confident that it is the best place for him right now.  Thank goodness! So we are now waiting for a lovenox level and then they are also going to do his immunizations here as they need him to have them at least 2 weeks before this next surgery.


We are scared and freaked out right now. This is not the outcome we were expecting but we have to be thankful that his body is compensating by providing blood to his left lung through collateral veins. If he wasn’t, things would be MUCH worse and even more critical than they already are. We did get the disturbing news that T is now the last surviving Hybrid HLHS of the first four. I knew about the first two, as I am friends with their mamas but knowing this is VERY frightening. Another bypass was not in the picture this soon. I wish there were some magical way to fix my baby boy. He has been through so much. Too much! It makes me sad and frustrated that I can’t make this better. I feel so helpless. I hate that…I HATE THIS! I am sorry but I am in my angry phase right now. I don’t understand why babies have to suffer. I don’t understand why so many of my new friends have to go through this too, why so many have to go through even much worse things. It is just not fair.


I am trying to be strong and positive, especially for T and my other kids but it is soooo hard when all I want to do is scream and beat out my frustrations out! I just want T to get better so that we can go home and not have him have to go through all of this. He is such a trooper and such a fighter and he has more strength than I can imagine!


Thank you everyone for all your support and prayers. I know I have said it before and this won’t be the last time I say it but I can not begin to express how much it means to us.


And while I am thinking of it I do want to say thank you to all of our neighbors, I am so terribly sorry I am just now getting to this but thank you all for the food you all chipped in on for us after we got home from last hospital visit….it was much appreciated and greatly needed as cooking was not on my priority list. The food was wonderful thank you all!


Hug your loved ones tight today-and everyday! Time goes by faster than we realize! Let your kids know how much they mean to you! I hope everyone has a great weekend Christy