Been Out

I just haven't been updating. Most of you who read this already know what's been going on.

I left the hospital on Monday... was it Monday? probably... I think anyway. Monday the 3rd...? Well, it was Sunday or Monday. Either way, we spent less than 24 hours out when Quinn started spilling ketones. I was very concerned because she hadn't been peeing. She was on the new, higher calorie formula and she wasn't doing, "well"... she was ok... just not where I wanted to see her. I was very concerned that she was dehydrated. she was having massive headaches still. so I drove her all the way out to CHLA again, due to the ketones. i thought for sure her labs were going to be wrong since Loma Linda refused to draw labs or check her urine. I was unsure of how long she had been spilling ketones. Her labs were all normal and she wasn't even dehydrated. This was good news. I was a little upset that I drove all the way out to LA, but I felt better about her health after learning that she was getting enough hydration at home. It wasn't completely wasted because I got to hang out with my friend and her mito kids.

Throughout the week, she still hasn't been 100%. a few days after we drove to CHLA, she was still spilling a small amount of ketones, she was just "off" and we were battling blood sugars that were 220-356. We figured out that she wasn't properly metabolizing her new formula. her mito doctor suggested taking her off the new formula and putting her back on the vivonex. The problem with this is that her caloric intake is precarious on this formula. We have an appointment on Thursday to see the nutritionist. I'm very concerned about her weight. She went from 42lb to 38 since the end of August. She was 38lb exactly yesterday, which means she is almost 37 lb. she has been losing weight so rapidly, I am truly worried about her.

The other day, I was at a restaurant with my sister and her family and my Dad. Quinn really wanted to eat, but she really can't tolerate it. I decided to allow her to have some soup. They only had broccoli and cheese soup, so we took all the broccoli chunks out of it and allowed her to have the soup, thinking it would drain. It did drain, but not very quickly. An hour later, Quinn was laying in my dad's arms, almost completely unconscious literally puking in her sleep. She was so pale. At first, i thought she was having a seizure or something, but this wasn't anything like any of her other seizure episodes, she was also a little aware of what was going on, but almost completely unconscious, none-the-less. She was sleeping... deeply sleeping and we were unable to wake her enough for more than just a mumble here and there. She was also puking... she was completely limp, like a noodle. She couldn't even hold her head up. Her blood sugar was normal and her breathing was normal. I frantically sucked all the soup I could out, but chunks of broccoli were clogging it up. We thought we should call an ambulance, but since things were all normal, shew as just sleeping and unable to arouse fully, we decided to just let her sleep and keep a watchful eye on her. IT WAS A VERY SCARY EPISODE!!! Thank goodness my family was there to help me.

The next day, yesterday, we had an appointment to see her geneticist. I think he was a little surprised with how progressed her GI tract has gotten since our last appointment with him in March. It was a good appointment. The man is very smart. The only disappointing thing is that she has Mito! You can't really do much with a progressive and incurable disease. He is increasing all of her mito medications by a lot. Quinn weighed 38 lb. we are not happy with her weight loss at all. i was not expecting him to bring up TPN at all. he said that if she continues to lose weight as rapidly as she is, we will have no choice but to do central access and give her PPN or TPN. She is just having a very hard time absorbing what is being fed into her.

I am very happy with the care her geneticist is providing her. He answers his e-mails and he is ok with me e-mailing him with any changes and he is ok with making suggestions to help her. I do not know what is going on with her GI doctor. He did not answer back to my last two e-mails. I left his nurses a message today about my concerns with her weight. I have a feeling, Loma Linda has given him a bad taste. it is just a feeling. I am very frustrated with her care there. I think the last GI doctor that cared for her was upset with me, but maybe I should stop enveloping myself in Dogma and email her GI doc back no matter what to update him. I probably will if I don't receive a return call today. He has a right to know that the new formula didn't work, that she is still losing weight and that I am VERY concerned with how things are looking right now. Loma Linda just didn't seem to care much when we were inpatient nor did they look at the bigger picture here. They told me that her metabolic state is secondary to her GI function, but in reality, her mito is the reason why her GI system is the way it is. Their information is also inaccurate (for instance, they put her discharged weight as 41lb.... in reality, she was weighed THAT MORNING and she weighed 38lb... I was there. i saw the scale. me and the nurse put her on it and etc. she didn't even weight 41lb at all the whole time we were in that stay.  If the last GI doctor was telling him that my concerns were unjustified in any way, i would expect her GI doctor to trust his colleague over my word. This is what I think has been happening and if it has, it would sadden me. I just want my daughter to get proper treatment! It is sad when the doctors don't take things seriously until they SEE with their OWN EYES that we aren't exaggerating anything!!! this stuff really IS going on! I thought about buying a video camera, when i can get the money and literally video documenting our hospital stays, our appointments, all of her episodes that are scary as hell! EVERYTHING so I don't have to deal with egotistical doctors who think they know everything about everything. YOU AREN'T HERE when my baby is LITERALLY PUKING HER BRAINS OUT FOR HOURS UPON HOURS!!! I HAVE to rely on the fact that you WILL believe what I am telling you and TAKE IT SERIOUSLY. Ugh!~ Sorry I'm just a little frustrated. I understand that there are moms out there that exaggerate things and make a big deal out of nothing. I don't do that. I might get worried sometimes prematurely, but my worries are justified