tag:blogger.com,1999:blog-29916680.post2129115906041712426..comments2023-04-04T03:24:36.079-07:00Comments on Jack's Journey and Then Some: Well, FAnnhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-29916680.post-36381087680987896742013-03-16T08:27:32.699-07:002013-03-16T08:27:32.699-07:00Ann, The doctors are planning to do a graft of Jo...Ann, The doctors are planning to do a graft of Jonathan's innominate artery to lengthen it and then put a piece of muscle (from his neck, because it needs to have a blood supply) in between his artery and trachea. The cardiac surgeon does grafts all the time. He just hasn't done this particular surgery for this reason. As you probably know, they often find out about a tracheoinnominate fistula when it's too late (and the patient bleeds out) so they don't really have any experience with this in a preventative sense. Anyway, we had it all planned for April 22 and now one of our longtime doctors just randomly said "Let's not do it!" So now we're forcing face-to-face communication between this doctor and the cardiac surgeon (and possibly the ENT) (which should have already happened, in my opinion, in a rare case like this). Anyway, I know the severity of the situation and will go ahead with the surgery even without the "blessing' of our longtime doctor. We've done it before and are not afraid to do it again. I have seen the reports regarding what's going on and I feel like we don't really have a choice.<br /><br />I read your most recent post (Fri) and am frustrated for you!! I don't understand when doctors do not return calls...especially to parents of kiddos with special needs. I joke that we are still waiting for the on-call pulmonologist to call us back from a call I placed one evening in approximately 1999!! It's really not funny...but after that many years I have let it go :)<br /><br />Hope things start looking up over there and that you get that phone call on Monday. <br /><br />AmyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-29916680.post-9544962986317038782013-03-14T22:49:20.626-07:002013-03-14T22:49:20.626-07:00Amy, the same thing happened to Jack. He has a ri...Amy, the same thing happened to Jack. He has a right aortic arch his aorta sits right up against Jack's trachea. When they bronch Jack, they can see the aorta pulsating from inside the trachea. Back in 2005, during a routine bronch, they discovered that Jack's trach tube was eroding through the trachea and if it did, it would puncture the aorta and that would have been the end. The pediatric cardiothoracic surgeon talked with the adult CT surgeons and they came up with the idea of putting a pericardial patch between Jack's aorta and trachea to create a barrier in the event the trach tube were to erode through. What are they proposing for Jonathan? Jack's neurologist did share with me that one of the top causes of death for her neuromuscular patients who are long time trach users, is the trach tube breaking through and hitting an artery causing a massive bleed. Not a pleasant thing to consider, that's for sure. I hope they figure something out to help Jonathan.<br /><br />Thanks for your support.<br /><br />Annhttps://www.blogger.com/profile/10834197308019791700noreply@blogger.comtag:blogger.com,1999:blog-29916680.post-37652668772566010072013-03-14T22:37:15.049-07:002013-03-14T22:37:15.049-07:00Eric, I had to look that word up, but you would be...Eric, I had to look that word up, but you would be correct! Annhttps://www.blogger.com/profile/10834197308019791700noreply@blogger.comtag:blogger.com,1999:blog-29916680.post-24710250213763288742013-03-14T17:40:35.932-07:002013-03-14T17:40:35.932-07:00Oh Ann. I can't believe this! Why do our kiddi...Oh Ann. I can't believe this! Why do our kiddies have to have the most outrageous things? I simply can't believe the rate at which these stones are growing!! I'm simply in shock. Hoping the Dr gets back to you quickly. Please let me know if you need anything. Loves and hugs! Sarahhttps://www.blogger.com/profile/08961062780068712820noreply@blogger.comtag:blogger.com,1999:blog-29916680.post-16357276521926542352013-03-14T14:01:35.870-07:002013-03-14T14:01:35.870-07:00I think the word your looking for is Fubar.I think the word your looking for is Fubar.Eric Fischerhttps://www.blogger.com/profile/02471331868560587898noreply@blogger.comtag:blogger.com,1999:blog-29916680.post-66917393961851413972013-03-14T05:39:47.476-07:002013-03-14T05:39:47.476-07:00Ugh!! Thinking of you today, Ann, and praying for...Ugh!! Thinking of you today, Ann, and praying for strength for you. I'm sure it's frustrating to have to deal with that darn kidney stone again. And I know firsthand what you mean by feeling like you are going to throw up when you think about any more surgeries for Jack. Our Jonathan has had about 45 surgeries already. We are contemplating a never-been-done-before surgery for Jonathan (his innominate artery is pressing on his trachea AND his trach tube has eroded his trachea on the inside...a fatal combination if not addressed surgically) and it makes me want to vomit! And when you say you are tired...I understand. I really get it. It's pure exhaustion....both physically and emotionally. But, we do it because we love our boys more than anything. Please don't ever give up, Ann. Jack is where he is today because of you. And please know that you have so many people who care (even people like me who don't know you personally!!). I appreciate the honesty in your posts. It shows me how I can pray for you specifically. And I do. <br /><br />Keep pressing on,<br /><br />AmyKAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-29916680.post-77726036567201766402013-03-14T05:33:59.777-07:002013-03-14T05:33:59.777-07:00Oh Ann! I don't like this news about Jack at a...Oh Ann! I don't like this news about Jack at all! I hope there is a less complicated solution than last year. You are in my prayers.<br />KristyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-29916680.post-14573313635265141152013-03-13T23:45:53.626-07:002013-03-13T23:45:53.626-07:00F indeed Ann!!! I just don't know what to say ...F indeed Ann!!! I just don't know what to say except I am SO SORRY. As always you are an exceptional advocate for Jack. I hope you have some time before surgery needs to be done. I'm glad Eric had a great birthday. When did he get braces? Anyway, you'll be in my thoughts. I really wish I lived closer and could give you an ear and a shoulder. Hang in there.Susanhttps://www.blogger.com/profile/16092188894818322564noreply@blogger.com