Doctors Might Be On The Ball?

Well I think that maybe, just maybe the doctors are getting their acts together. On Wednesday they came back and started to talk again about going home. I told them that if they made sure the discharge papers said that he was having cyanotic episodes then I would take him home. Well needless to say I didn’t see the doctor again until Thursday. They know that they cannot send a child home that isn’t stable.

I was also told by the doctor on Wednesday that one day soon I need to start advocating for A. I think I almost fell out of my chair. I asked if she was kidding and she said no. I said that from day one that is ALL that I have been doing. I haven’t stopped advocating! And as far as I am concerned I advocate WAY too much in my mind. I shouldn’t have to fight and fight to try and get answers for A. She then told me that doctors are always going to come in and want to do tests and that isn’t fair for me to continue to let this happen. She said at some point I need to start advocating that enough is enough. WHAT?! But no one wants to do tests. And then she told me that it isn’t fair that I am requesting all of these tests for him. In particular the probe that he is having done on Monday. She said it is unnecessary testing that I am willing to put him through. Now give me a break. The last thing I like to see is A having anything done. It is hard for me not to get emotional when they take blood! But I feel the probe IS necessary to see if he is refluxing … end of story.

After some more fighting about the echo cardiology finally (but reluctantly) agreed to do an echo. So that was done yesterday and from what I heard last there was nothing seen. This is wonderful news! Just another thing that I can rule out.

Genetics came up in conversation again and she didn’t feel that was necessary either. I was confused because I had another doctor mention that A could have some sort of genetic mutation. She told me that the next time that I was pregnant I could just have an amnio done to tell me if anything was wrong. I told her that I couldn’t do that. I already had one preemie and there wasn’t anything that I would EVER do to risk that again. She said if I had it done early enough then it would be okay. Ummmm NO!

Well guess what? Genetics is going to be doing a consult. They came up yesterday but will be coming back on Monday to speak to me.

I also told the doctor that I felt that if A was “typical” then they would be doing everything possible to try and figure out what was wrong with him. That if he wasn’t a preemie and didn’t have cerebral palsy they would figure it out. I really am getting the feeling that they look at him as TOO disabled. But A is my child and that doesn’t matter to me. He is my life and I will continue to fight for him as long as I have to. I think they are starting to realize this.

He continues to have episodes. It seems odd too that most times they are at 2pm and 10pm. I can’t seem to figure out what is going on at that point that would cause this to happen. Two nights ago he had one that really scared his nurse and she is a nurse that usually works in the ER. This says a lot to me. Today he had one for about thirty minutes where he didn’t come above 60. I just don’t know what to think about them. All I know is that they are very hard for me to deal with and I myself feel really scared at times.

Now for some long overdue pictures…










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7 responses

  1. huether family

    glad to hear that you might be getting so answers. don’t listen to what the doctor’s say, you have always had Ashton’s best interest in mind and have gotten him this far by yourself. your awesome Shannon. I just love that last picture of Ashton and Jeff, he looks so grown uptake caremiss yaLove Mandi

    March 16, 2008 at 2:23 pm

  2. baby james

    OMG, Shannon I got so mad reading your last post. Who does that Doctor think she is!!! We all know what an adovate you are and have been. I think most all preemie parents are, due to all we have and are going through because of prematurity. Yes she may have a degree from a book, but not the degree of the mother to a 24 weeker, with special needs, who wants all the best for her son, including tests and then some. Also, it is appalling to think that just because Ashton has diiferent needs then some children they would not go the extra mile to concur his troubles. He faught all odds to be where he is now and never gave up and neither should they. Just like that is why us as preemie parents protect more and advocate stronger than parents that have not been through such ordeals, so early on, and for that matter Doctors who don’t understand all that has been acomplished from our miracles. But I know I don’t have to tell you that. Gosh it just irrates me. I don’t know what laws and such you have in Canada but is their someone you can contact to report all you have been dealing with. I can only imagine how tired you must be physically and emotionally of playing this tug of war medical rope with your son’s life and future. They need to get it together and do their jobs despite the odds, they feel they are against. Plus who are they to decide that any ways, they now have crystal balls in medicine. Lastly is this Doctor on vacation what mom or parent wants to have their child poked and proded especially after all they have endure in the past, NICU LIFE! HELLO, when THEY WERE NOT EVEN TO HAVE BEEN BORN YET—- Give me a break. You hang in there and keep doing what you do best and have been doing for the past 2 plus years something is working, Ashton is happy and ALIVE and YOUR CHILD. You are by far the best Mother I have encountered and I have never met you. Print this and hang it on the front door as the Doctors and nurses enter. You have my permission. I feel a little better now sorry if I ranted to much but I am just blown away. Love Tracy

    March 17, 2008 at 12:23 am

  3. Vickie

    I can’t believe that doctor’s comment about advocating! Really unless they are in your shoes they really can’t say what should and should not be done. Anyone who thinks they know what should and should not be done, and thinks they know what they would do if they were in your position, is just a bit egotistical, among other things.

    March 17, 2008 at 1:16 am

  4. CG

    You know that dr just doesn’t like that they got called out. Shannon, seriously. If they don’t start coming up with answers. Think about getting in touch with a reporter. A child in the hospital for almost 3 months undiagnosed and his Mother having to fight drs to keep looking is just not right. He is a child. He is alive and deserves to be treated as such. PERIOD. The whole thought he may not bet getting par treatment because of disability, just makes me roar. I have Landon and that would kill me. Also, Shanoon, I worry about his stats staying low for so long? I mean at one point can that initself do further damage? I wish there was something I could do. Ashton is keeping that cute smile. Glad to see he seems to be holding up well and you, too!!Stay tough,Chasity

    March 17, 2008 at 1:18 am

  5. 23wktwinsmommy

    Hi Shannon,ugh…I can’t BELIEVE that Dr said that to you. He is your son and you are intelligent enough to know having sats in the 60s for 30 minutes is not ok and it is not safe to take him home. You are trying to figure out what is going on…not trying to put Ashton through unnessary tests.I’m glad you mentioned a possible reason behind the Drs not being more alarmed by what is going on with Ashton. This too had crossed my mind but I tried to talk myself out of it, thinking they have a responsiblity to all patients, not just those who are able-bodied. But what if you mentioned this to them. Asked them how they would deal with a “typical” child Ashton’s age presenting with similar symptoms? Would they say tests are unnessary, or would they run everything immaginable to try and find answers? You want to take Ashton home but I don’t blame you for wanting to stay and get the answers you and he need. I hope they can put their heads together and figure this out. You guys have been thorugh more than enough!

    March 17, 2008 at 6:06 pm

  6. Erin

    Just checking in to let you know that I’m thinking about you and Ashton!

    March 17, 2008 at 6:14 pm

  7. The Hull Munchkins

    I’m so sorry this is still dragging on for your family. I think you hit the nail on the head when you mentioned that the docs are focussing on his disabilities. I often feel the same way about Abby. When I know something is wrong (deep in my gut) they don’t seem eager enough to figure it out, b/c of Abby’s obvious disabilities.So, just b/c they have challenges that means it’s ok for them to suffer more? I don’t think so. And just like typical kids sometimes their problems can be fixed! Or at least figured out.I can’t imagine how horrible his cyanotic fits must make you feel. The only comparison I have are Abby’s prolonged seizures. I hate feeling so helpless.You are being a great advocate for Ashton… don’t let some random doctor tell you otherwise. Those people don’t know you. I can’t believe she said that to you.Hang in there, and keep us posted.-Patty

    March 17, 2008 at 7:16 pm

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