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  #1  
July 9th, 2011, 10:56 AM
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Cinci went pretty well. Hem/Onc was great. They drew literally over 20 vials of blood (some partially full) so that we wouldn't have to have labs shipped or redrawn. Danny did really well. It was good that we finished when we did though because as she was finishing the last one he started getting cool and clammy. That was his limit. She said if that wasn't supposed to be the last vial ordered it still would have been the last one drawn. I love this office! I haven't gotten any results yet. They said they would start calling in about three weeks from the appt which will be this coming Tuesday. GI was not helpful at all. They didn't even order any tests other than a food journal. He said, "At some point you have to stop looking for a diagnosis and stop testing. You just have to treat the symptoms." I was sooooo not happy with that. Basically he said that it didn't matter that Danny literally stopped eating over night and even when he was eating 3000+ calories a day he didn't gain weight. That is ok. GRRRRR!!! That doc I didn't like so much but am ok with that now that I know the GI in Knoxville is looking into things well enough for me to be comfortable. Hem/Onc suggested just having the ped order monthly cbc's for a record rather than trying to hassle local hem/onc unless we get a solid diagnosis... They drew several genetic tests and are considering reordering the SBDS gene test as well. His pancreas was not fatty which he was very surprised about. He said that with pancreatic insufficiency as bad as Danny's is he expected the SBDS gene to come back with something or the pancreatic function test to have been done wrong. The GI dismissed that theory because he "knows the GI that did it." Great reason huh?

We drove back from Cinci the night of the appointments and got in around midnight. We left for Cali the next day at 11am. Phew! That was a long set of days. But it wasn't over. The first night we drove from Knoxville to Memphis. On the way the Turbo in the RV started messing up so we spent 2 nights there getting parts and getting it fixed. The next day we stopped in Sallisaw, OK and hoped it had been fixed. The next day we drove through Amarillo to "Nowhere" NM and stayed there a night. The RV almost overheated and wouldn't go over 55 on flat ground without getting too hot. We made it to flagstaff the next day and that is where we got really bad news. The RV has a cracked manifold and several parts that need fixed and replaced...including the turbo. Some of the parts HAVE to come from a company that filed bankrupcy or the warrenty is voided and they take up to 2 months to get a part out. We rented a van because we had 7 people and went on to cali, stayed in hotels, ate out, etc then did the same at the grand canyon and chama, NM. We went back to flagstaff only to find out that they were waiting on some parts because they had to make sure x, y, and z were actually broken before they could order a, b, and c! We finally decided that we would have to find another way home as the rental car alone had already cost over $1700 and getting us all home on rental vehicles would cost over $2200 just for the vehicles. They won't rent a van out for a one way trip so we would have had to get 2 cars. I finally convinced them to look at one way tickets for 7 people and we got them for about $600 less than it would have been to pay for hotels and food and such along with the rental cars. We took the red eye out Thursday night and finally landed in Knoxville at 8:44 Friday morning...with the time difference that was 5:44 am the time we were used to. But let's not forget the 30 minute night terror that Danny had on the flight from Pheonix to Charlotte an hour after the flight started. And I was in the back half of the plane with all the unfriendly people...Grrrrr... Someone had the head flight attendant check to make sure he was "okay." Ugh...some people. Thankfully she knew what a night terror was and knew there was nothing I could do other than what I already was...

So we are all thorouhgly exhausted and lagging 3 hours behind everyone else in the eastern time zone but we are finally home!

Last night Danny decided to give himself an epipen just for the fun of it. If I hadn't had enough excitement that certainly capped my limit. We called his allergist and the on call said that since he put it in the right muscle he should be okay but if he gets flushed, dizzy, starts vomitting or acting generally off call back or take him to the ER if it is bad enough. He did fine so we stayed home. I have definitely had my fill of adventure fort he summer. Can things just stay smooth from now on? No...they can't. I got Danny a fish tank and 6 fish at the store last night (before the epi incident) and got everything all set up. Last night they were fine. Today when we woke up...the three neons and the 2 little blue and red ones were dead. All we have living is the algea eater. At least this excitement is replacable... It still made me sad though. We are suppose to go to the pet store this afternoon and figure out what to do for the tank to try and make sure it doesn't happen again...

I will try to get caught up but I may be lazy and just jump back in.

ETA...oh, and Danny caught Adnovirus from my brothers. So far he is doing well with just his maintenance but we may have to start Xopenex soon if his cough doesn't settle down. He has no wheezing but he has a LOT of gunk in his throat from drainage. He is such a trooper. :')
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  #2  
July 9th, 2011, 02:18 PM
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Wow, what an update! ((Hugs))

Who was the GI you saw? That really surprises me that he said that. CCHMC Gastro is #1 in the country. That bugs me that he said that!
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  #3  
July 10th, 2011, 07:48 AM
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We were supposed to see Meithke but they swapped us at the last minute. He was older. I think hem/onc said that he was the head...
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  #4  
July 10th, 2011, 10:11 AM
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I'm not surprised at all that the Gi said that. I'm sorry it upset you though. It's what we're told about Carrie all the time. "She'll probably never have a diagnosis and you have to just start treating what you can". For the most part we have stopped testing. We haven't stopped looking, but we're very stringent now on the types of tests we allow her to go through.

Crazy bad cloud with the vehicle there! I'd have been in tears with frustration.

Sorry little guy is sick too. you guys can't catch a break
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  #5  
July 10th, 2011, 03:08 PM
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We replaced the alternator and found out while we were out and got stuck that the new one was also a dud. So we got the "new" one replaced with another new one and now I think the battery is fried. It won't even jump. I am soooooooo sick of this... Danny has surgery on Tuesday and as of right now I don't even have a way to get him there...
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  #6  
July 10th, 2011, 04:33 PM
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The head is Dr F. and I know him personally. He's chief of staff and he's famous in the gi world for many reasons.

I really hope the test results show something so you can get your answer. The next few weeks will feel life forever.
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  #7  
July 11th, 2011, 09:03 AM
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Not F...I looked it up. It is the first on the list...starts with Bal. He was rude. He wasn't too happy that I didn't feel all of his GI friends in Knoxville were brushing off my concerns...so he joined them. At least that's how it felt to me. He seemed insulted that I had gone through 3 GI's that he knew and was on the 4th...
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  #8  
July 12th, 2011, 12:21 PM
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Oh, ok. I know who you're talking about. I've only met him once and he just annoyed me (he was pushing more surgery). Well, it's just your luck that you meet the one GI that sucks! ((Hugs)) I wish you would've seen Dr P or Dr F.
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  #9  
July 12th, 2011, 09:01 PM
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We were supposed to see meithke but his appt didn't match up with hem/onc...
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