Well Kyleigh is back to her normal vomiting routine. She definitely still cannot handle any amount of volume in her stomach. Bolus feeds are completely out of the question. If she eats food it backs her up and then it comes back up. So while I feel like we have DONE many things and unearthed more we still are no further ahead than we were at the beginning of the summer. We got the “we need to talk about a Nissen” email from Joe. Which I knew was coming sooner or later…. I am still clinging to some kind of hope that Kaul has not exhausted his means yet and there will be something else he can try… some other “cure”. It’s not that we are opposed to the Nissen. We are fine with it. Joe would place it. We obviously trust him more than anyone else and we know he would do an amazing job on her. We just want to know that we have exhausted ALL other methods before resorting to that. We also MUST be sure that this Nissen would be the correct choice with Ky’s combination of Colon and Intestinal issues. We are willing to wait this out for another month or two to finish exploring our options.

Which brings us to the part of our story where I tell you about my experience today. I shall preface this by saying that the following phone call left me in sobbing tears. Not angry tears… “at the end of my rope” tears. I had written down the appointment time for follow up with Dr. Kaul (motility) but had not entered it into my google calendar. I was trying to figure out at time to be involved with the Radiothon and wanted to make sure it wasn’t going to conflict with going to Cincy. I had to call the Feeding Team / Aerodigestive to find out when our appt was in August. The amazing nurse tells me that our appointment is NOT with Dr. Kaul. He actually is not with the Feeding team anymore! I just up and lost it. Balling on the phone… I kept apologizing to her for being a blubbering idiot. I felt so bad that I was crying but this was just it. We had waited almost two months to see Kaul, and then had an endoscopy with him. This was to be our follow up from that and he was GONE!??? It was too much for me to handle as we are desperately hanging onto hope that he will have some other option than Nissen for Ky.

She goes on to tell me that he IS still seeing patients in GI dept. That was a huge relief, but now we have lost our appointment that we have waited months for. Also I had mailed Ky’s MRI CD’s to Rebecca (super sweetie btw…) and she was going to give them to Kaul to review with Dr. Crone (neurosurgery) because he believes that Ky’s Chiari may be affecting her more than we think. I was panicking that those were lost and we all know what we went through with our trip to Chicago to get those stupid things.

The nurse on the phone cancel our August appointment with Kaul and tells me that she will see what she can do about getting me in with GI and not having to wait forever and a day. About 10 minutes later Rebecca (god bless her heart!) calls me back and the nurse must have told her that I was a wreck because she was so nice and gentle. She gave me Dr. Kaul’s GI nurse’s name and number and said that she had already called ahead to let her know I was calling her. She also said that YES she did get the CD’s but Kaul is out of the country until 8/11 and she will be passing them on to him ASAP when he gets back. I called the GI nurse and left her a message and I hope that we can get in touch with her by the end of the week to get on a waiting list for Kaul in GI.

I also had to call Urology and tell them that we were not coming to Cincy tomorrow for admission. I called the Immunologist here today and they said our chart was “on the top of her stack to call back” yet at the end of the day… no call. I will call once more tomorrow. Sigh…….

Some days it is just a LOT to deal with. By 2 pm I had a splitting headache and was just worn out from crying. I need a nap! LOL

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