March 12, 2009

So I’ll try to pick up where I left off last. The pneumatosis is gone! The iv flagyl was stopped but then restarted again because the same ol’ ugly symptoms appeared again, vomiting/retching. This time it seems they’ve come back with avengance. This time the flagyl did nothing to help. So the nurses and I decided it was best to discontinue the antibiotic. The day we stopped it Danielle spiked a fever…..go figure. However there is an up side. It seems when she has a high fever froma virus or such the vomiting/retching subside. I think it’s because she is too lethargic to retch. A couple of nights before the fever she had not slept much. In fact one of our nurses said it was good that she (herself) has restless leg syndrome because that was the only way Danielle got any rest was for her to rock Danielle’s bed. Ha! So fast forward past the initial temp and the next morning she’s at 104.0 ax and needing O2 because her stats were in the low 80′s. Within seconds of oxygen being on she was back to normal stats. She stayed on O2 for most of the day although she didn’t really need it, she seemed more comfortable being on it. The next day we went back down to that dreaded place in the city to do a follow up w/the wonderful (NOT) GI team. The doctor we saw was one of the nicer ones however, I still have many doubts about her. Anyway, we are suppose to be weaning Danielle off the TPN and back onto a new formula. That should start tomorrow. She is back to running 101.0 temp with a rough cough with phlegm. The nurses consensus is that her lungs are clear but she sounds really bad at times. A blood culture was done on her yesterday because of the temp issue lately and I haven’t heard anything. Considering this is Children’s I will not be leaving it up to them to call me, I’ll be calling them.

As we speak the best doctors in the country and world are all together meeting in Germany discussing the latest developments in research and findings. Let me just share with you all how much they really care about our kids and adults affected w/MLD. One of Danielle’s doctors was in the airport waiting to board to flight to Germany and had an extra 10 minutes so she decided to give me a call just to see how Danielle was doing. With all the things on their minds and stuff that needs to get done for these types of conferences she took the time to make the call. Even though these docs can’t “cure” Danielle they do make every attempt to show compassion and make sure we have the things we need to make life a little more easier. Not to mention most of Danielle’s care is handeld over the phone or through email since they are out of state. That is a lot of time they are spending that they are got getting paid for, at least not from our insurance company. The the new President’s lifted ban on stem cell research I can only hope that in the next 4-5 years parents with an affected MLD child or adult will have many more options, if not a CURE!

Thanks for checking in on Danielle today!

With love,

Megan