We had the privilege of meeting Dr. Bob Owens before today but both times we were in the hospital so it was kind of hard to actually chat with him. Truly we really enjoyed meeting with him. I know that he will do a great job. If Joe trusts him … then I have no worries. The things that worry me is just the standard UK bs… all that stuff that we don’t have to worry about with Joe around I am truly terrified will surface again without him around. I hate to say it but I know that these last times we were admitted … they were JOE experiences.. not UK experiences.

i know that every doctor is very different. I know that everyone thinks we are just looking for another Joe… and we are NOT. Truly. But we are looking for the RIGHT person. THAT is why we were so comfortable with Joe. I knew beyond a shadow of a doubt that he was the RIGHT person and now in hindsight we are even MORE glad that we chose him.

I mean today we were chatting with Bob about pain management and he flat out told us that she is going to have surgery and she will have to feel SOME pain… we have to know that her arms and legs are working. THAT… that right there is what I am talking about. NO… she does not have to feel PAIN like I am talking about. She does not have to be so in pain that she is desatting… and truthfully… I am not upset that she ends up that way… as long as someone is willing to get her OUT of that pain and in a hurry.

I told Bob today that if my kid is in PAIN I am NOT going to be a happy mom. He said that really they do Tylenol with Codeine for these kids… I am thinking YEAH… this is the kid who needed morphine AND toradol AND versed AND tylenol after a simple laprascopy!!!!!!! Why does EVERYONE seem to think that their surgery is SOO different than oh say the other 7 that she has had. Yes its not as bad as the Open Heart… but I am comparing to the g-tube which is the most recent and probably LESSER surgery then the Neurosurgery… and we all know what happened with that. Still no one seems to GET IT. What do you NOT understand about 5% Kyleigh. If its weird… if it happens to less than 5% of the population… it WILL happen to Ky. So of course Bob says today “the only real complication that happens is spinal fluid leakage and that happens in only about 5% of these surgeries…”………………………………………………………………

O M G……….. he did not just say 5%. I of course said… really… you have GOT to be kidding… her nicknamed is not 5% Kyleigh for NO REASON… so Bob said he retracted that statement – its happens in about 6% …………… ugh.

The one thing I hate is that Joe is the ONLY one who believes us. REALLY… I am NOT the overreacting mom who exaggerates everything. Truly I tell the truth… I log and chart and record … and still all the doctors think that I make this $hit up. But the thing that bothers me the most is that every doc who works with Ky has to learn this lesson for themselves. Which means that my baby has to suffer for them to wise up and that makes me angry in ways I cannot explain.

The great thing that I REALLY appreciated about him was that he seems to be a “don’t borrow tomorrow’s worries” kind of guy. Maybe we need more of that in our lives. Maybe this is my sign saying “STOP WORRYING”… I know I worry too much. Bob seems to be one of those people who will worry about it when we get to it. My philosophy is that THIS method is just poor planning!! I need a PLAN man… is that too much to ask? Really, I just have to make sure that when the crunch time comes that Bob is willing to make things happen.

We set a surgery date with Bob today for March 18. We will do her pre-admission stuff on March10. I have no feeling about this right now. We left his office today feeling like he is a nice guy… I am sure we will get along with him great. We actually thought he was pretty hilarious… but I just don’t know if this is right. Troy asked me today when we left the office was Bob “it”… I honestly cannot get a “read” on it. I definitely did not get the “run for the hills feeling” so that is a step in the right direction.

On top of everything else… Ky was due for her Synages today and the infusion company is still giving me flack about getting her Peptamen paid for. I swear to my father in heaven… if the girl from the infusion referred Kyleigh as a “crippled” child one more time I was going to jump through the phone and wring her neck!!!!!!!!!!!!! Of all the things she IS… crippled is not one of them!

Overall it was a very frustrating day. My head hurts and I need to sleep on this. i might need to sleep on it for several nights.

We have to speak at a conference in Charleston between now and then so hopefully I will have some time to get away and clear my head and really think about this. I need to come to terms with this. We all know how I am… I NEED that peace… I need that If mama aint happy.. aint NOBODY happy. LOL

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