Appointments and More Appointments

GI Appointment

We had Kylee's GI appointment on Friday and it went very well. She has gained 2 pounds since she has been discharged from the hospital in March. All her tests for C-diff, parasites and rotavirus came back negative so that left the doctor wondering what is causing this major case of diarrhea. So he decided he wanted to run some more test and check for a lactose intolerance and protein intolerance along with some other things. I asked him about reducing her to a 22 or 20 hour feed and giving her tummy a break and then increasing the amount she gets during those hours so she is sure to get enough "food". He didn't think that was a good idea because he thought that would increase her diarrhea. Well....on Saturday morning her machine went off nice and early to let me know she was out of milk. I got a new bag of milk and set in on the dresser and decided to go to the bathroom. When I came out I forgot what I had been doing and went right back to bed. She ended up having about a 2 hour time span with no food. All day Saturday she had 2 diapers. So I thought hmm...that seemed to work good so I have tried it for a few days now and it has been working great. Each day she has only had 1 or 2 diapers (#2 diapers) and I have been giving her some pedialyte to make up for the milk she is not getting during the span. So with all that being said I playing Dr right now and adjusting her rate so we can increase her milk she gets in that 22 hours and continuing to give her that 2 hour break. If it works that is all that matters. Then I will just call GI and tell him I have it all figured out. That is what I like about her GI is he trust me and lets me run the show :) We also got the OK to give Kylee food by mouth again so we are slowly introducing that to her. She had a few days that I have never seen her eat so well and then other days where she didn't want to open her mouth at all. Just have to keep trying.

Cardiology

We saw cardiology today and that went really well. We do not need to come back until September unless we have issues. She said our issues would be her hands and feet turning cold and blue, puffy face and respiratory issues. She said those would all be signs her heart is not functioning properly. All those signs were things we saw when she was hospitalized in February just didn't know what they meant. She also told me that with non-compaction cardiomyopathy she could go into heart failure. She said it could be today, tomorrow or 40 years from now. She said if that happens she will have to send us to a different cardiologist in Milwaukee who handles that situation more then she does. Kylee has also had a very dry barky cough for about a month and she thinks it may be from her heart medication so they are switching her to something else. They also gave us a website to go to so we can check any medicine we give her to make sure it is not something we shouldn't be giving her because of her heart condition. She told us her cardiac output is 60% which is good. Overall a very good appointment. They also said she is still not on the growth chart. I was hoping with that 2 pound weight gain she would be at least one or two percent. Oh well...as long as she is healthy.

Neurology

So...Milwaukee called and said Kylee's neurologist has no openings until December 2009. Crazy. I can't believe she is booking out almost a whole year but I guess thats what happens when you find a good Dr. They said they would put us on a list for cancellations (not sure why anyone would cancel when they book out that far). They called last week and said they can get us in on Monday April 20th so as much as I don't want to go back to Milwaukee right now I know we have to. So we will be making the trip on Monday. She has been having a few seizures a day but they are so small and last only seconds. She mainly just curls her fingers up or puts her arms straight out. Something that you wouldn't know was a seizure unless someone pointed it out to you. She has been such a different girls since being on the medicine for her seizures that I continue to hope that it works. Therapy is so happy with how well she is doing considering the rough couple of months she has had. At least we know what our options are if the medicine doesn't work and our next step would be a special diet for her. Our last option is surgery.

Nursing

Well our nursing information has come back from the state and Kylee has been approved for nursing care until April 2010. That is a whole year. We are so excited about it because this is the first time she has been approved for a whole year and we didn't have to fight them on it. EXCITING!!!! So we should have our 2 new nurses starting soon and one of them said she would do 1 night a week which will be nice so that the 2 boys and I can get some time to do things together that Kylee's can't do or doesn't enjoy doing.

School

Well Friday is our big appointment with the school psychologist. I have a huge list of questions and reasons why Kylee should have a one on one aide and/or nursing care during school. I've been told to come prepared but not defensive. That New London school district usually works very well with parents but that I need to know Kylee's rights. It all sounds like a scary process but something that has to be done.