a rare bread

Every once in a while we come into association with a doctor who we think is actually what a doc should be, they are so rare however that we call them a rare bread. friday resulted in one such meeting.

at clinic the SB team determined that saylor needed to see a GI specialist. I knew this might be coming and it greatly concerned me considering that is just who stock needs to see and i was having a difficult time getting an apt in the forseeable future. Saylor's bladder surgeon called and got the GI doc to see her right after SB clinic so we headed to his office to proceed in long discussion and retelling of the last few weeks of events. we came up with a plan as to how to proceed to discover the culprit behind her attacks. it felt akward as she was doing well that day. nate and i continued to feel rather crazy and emotional about all of this. he was late for surgery because of us so he sort of rushed off after but was so nice. his secretary thought he wanted the test done that day (he wanted it soon but it didnt have to be that day) so she scheduled it that way and nate and i took it, afterall we have wanted all along to get this solved we have done so much whinning (so to speak) so nate cancelled his scout campout and we settled into primary childrens, we knew she would be admitted for the test. (we also told him about stock and got an apt for him on monday.)

we entered the test with the tech telling us this is probably the worst test to go through that they do there. great we think. and then they go onto say that they mostly do it on teens and that they havent done it on a 5 year old so she may need sedation. so then we go through a round of tape to get through to get her some sedation. after talking to dr jackson who is surprised she is there not knowing she is doing the test today. (he went home right after surgery) he says we should reschedule when we can sedate and he can be there. we are thinking well ok we cancelled the campout for nothing. i talked to him on the phone for a minute when he suddenly just says nevermind she needs it done i will come back in. i insisited that we did not want to inconvenience him and he insisted that he come in. so he wrote for sedation and we began the process.

make a long few hours into a short version, she was doped up with IV versaid and lots of ketamine and yet still she was not out of it and screamed and moved the whole time. it felt like we were torturing her and we didnt know what for? it sort of did not make sense and both nate and i were very emotional as well. it was so difficult with the drugs on board i cant imagine what it would have been otherwise. the test did not yield any results that helped us in any way. dr jackson considered keeping her at one point for a go lightly clean out but after the test determined that it wasnt needed. still no closer to answers and all so exhausted he sent us home.

here is what was astounding. he was soooo ... not doctor like throughout all of it. how can i describe this, there is this usual demeanor. he does not have it. so kind and willing to do what we needed and so sympathetic to what we were suffering. telling us over and over i am so sorry. very understanding. here it was the weekend and we were headed home to what i dreaded to be more problems without a way to get any real help from anyone while they take there leisure time. but no he could almost see into my mind and offered up his personal cell so that we would have it should a problem arise over the weekend. this was the very first time he had seen saylor. i was astounded and so comforted. have we used the number? no. but its there. it feels so good. he also gave us straight through tickets for xray to hopefully capture on xray an actual attack.

most of sat she felt pretty good, exhausted and scared but she felt well. we had a good day and good evening. i actually started to think perhaps what we have gone through was not for saylor it was for us, we needed to learn something. this left me in deep reflection over the last few weeks events and also really sad. i hoped that the worst was behind us and somehow the attacks would not return. to my dismay last night at around 2 am the attacks ugly head reared and came back. i went to the hospital at 3 am for that emergency xray. i still do not know the results of it. nate and i felt like we should not bother dr J, afterall we would see him monday and the attack had gone just like it came. we have been doing this for weeks and weeks now so we can do it a little longer.

so thats where things stand. i still feel serious anxiety about the lack of answers and the continueing of symptoms but i feel a lot more comfortable about who is handling this. i also just feel worn down, just going through the motions. not entirely thinking the way i would like to and unsure of when i will think that way again. and so it is, we go on.

so just like the song says should i give up or just keep chasing pavements?