Update

Tomorrow will be one full week in the hospital and here's the update:

She's still on antibiotics but they've been switched to oral (or GT in our case). We are still here though because she's still working on feeds. We knew this would be a big hurdle. As much as we don't want to be here we really don't want to go home before we get that worked out because that's what's been going on for the last month at home! She did great on continuous feeds but as soon as they moved to bolus feeds things got a little hairy. She did great on 90mls over an hour but then as soon as they tried to move beyond that she started getting stomach upset. Today we've been at 115mls over an hour and she did okay for the first feed, then the second one we had to stop it at 90. The third time she took all 115mls but she was asleep and woke up crying around 100mls. We just let her fuss since she wasn't tugging at her tube or grabbing her stomach like she was before. The time after that she was about the same. She fussed around 100mls but not enough for us to stop it. We talked to the attending and he said that if she continued to have problems like that overnight we'll increase her Erythromycin dose tomorrow. We talked at length about what our goals would be and the biggest goal is to get her on 4-5 bolus feeds during the day and no feeds at night. In order to do that we'd have to get to 150ml over an hour. We are really, really far from that goal so it looks like we'll be here a while figuring this out. If by next week and upping the Erythromycin we still can't get her there the plan B goal is to do 4 bolus feeds during the day of whatever she can tolerate and then do the rest overnight as a continuous feed. So that's feeds. It'll keep us here about another 4-5 days at the least.

Here's the other little bit of news we've gotten since we've been here. (Please insert sarcasm here!) Genetics is finally on board with the high possibility of a mitochondrial disease diagnosis. When we got admitted we sent an email to our genetics counselor about wanting a referral letter from them to send with Dr Shoffner in Atlanta since he's one of the top experts on mito. and we'd like her to be seen in his clinic. Interestingly enough first thing Monday morning our geneticist Dr Smith came in and reamed Kathy for jumping so quickly (we've been trying to get her diagnosed since March) to mito. She went on an on about how there's no way she has it and we are going to get labs to prove that she doesn't. So she stomped off as quickly as she stormed in and then wrote orders for about 5 mls of blood to be drawn for various things to prove that there was no way she had mito. They drew the labs (4 sticks -another story)and then Tuesday afternoon Dr Smith storms in again singing a different tune. Two of the lab results are back and they both point STRONGLY in the direction of mito. Why will doctors never learn to listen to a mom? Grrr. More specifically, for my medically minded friends, her CPK was 993 (normal is 60-305) and her lactic acid was 4.6 (normal is 0.6-2.1). Both of these indicate there is significant muscle damage or wasting. So now Dr Smith has written said referral letter and it looks like we'll be headed to Atlanta within a month to see Dr Shoffner. That visit will include a bunch more tests as well as muscle and skin biopsies. I don't want to have to put her through all that but I also feel like we have to get a diagnosis. If she does have mito. we need to know which one because they all have different therapies (no real treatment or cure) and life expectancies.

Yeah, I said life expectancy. So basically the way Kathy and I feel is that if there is a test or procedure that can tell us how long we have with our daughter we need to know. It changes how you'd parent a child if they're not going ever be an adult. I also will do whatever I have to do and sell whatever I have to sell in order to not have to work extra shifts every single week. I'll cherish every moment I have. I know I should do it anyhow and I know after going through all this I'll cherish every moment with all my girls. Life is just too short and you never know what could happen. Nothing will ever be more important than spending time with these kids.