Lung Update #21 - Short & Sweet & Mindless

Ok, I am not going to lie to you all, I am tired. Today, our day of stability ordered by the doctors, was just that - a day of little activity in terms of medical procedures and such. So there are many positives that came of the day. However, because we were unable to see any giant leaps forward, it was somewhat of a struggle today too. Now, once again, let me list our progress. We have now gone 2 1/2 days without hiccups, fever, or nausea. The amount of fluid filling the drainage tubes is reducing drastically. This means the area that they are draining is becoming less and less filled with fluid. Today, Jeremy walked 6 times. He ate two meals, 3 if you could his 1/2 bowl of apple jacks this morning. He was put on a restricted diet this morning - LOW FAT. Have they seen my husband? Really? No, seriously, they have seen elevated numbers in his pancreatic enzymes and they are a little concerned that he might have pancreatitis. So to ere on the side of caution, we are not going to overwork the pancreas with fatty foods - Jeremy's primary diet. :)

Dr. Malech, our CGD doctor, feels that the pancreatic enzymes are elevated because of an antibiotic that he has been on for the past 6 days. They have taken Jeremy off of this antibiotic and given him a steroid. Dr. Malech expects to see immediate results tomorrow in the blood tests. Pray that this is so. This would be a larger step and one that would re-establish some of Jeremy's hope. Sometimes it feels, to him, like they keep telling him "this" or "that" could be better or might be infected, etc. He needs to hear, "that is not infected and you are moving yet another step forward. Good job on all the hard work."

He will be on restriction for any nourishment after midnight because they are going to do a CT scan in the morning. After evaluating the CT scan, they will decide what to do about the tubes. My prayer is that they remove one of the tubes and reposition the other two. I think, just something this large will set Jeremy into another league of competition. If they do not remove a tube, and instead, just reposition them all, we will take that too. We just need some change and some confirmation that the exercise is paying off.

Again, today you have flooded us with encouragement and support. We got to see Emma and Abbi on video thanks to Kim Galloway. My they looked wonderful and it did both of our hearts good. We also got to talk to them thanks to Sherry. Emma and Daddy had a special talk and I could tell in both of their voices it was a wonderful dose of medicine. Yesterday, we got a great package in the mail from the Wilsons and we have already played our new game several times. :) TOMORROW I AM GOING TO A LOCAL SPA THANKS TO THE TREMENDOUSLY GENEROUS PEOPLE OF HAYDEN MIDDLE SCHOOL. I can hardly wait - can you tell? This will be amazing. So if nothing big happens tomorrow, I will be refreshed and rejuvenated to just continue to FIGHT HARDER.

Now for my randomness...why do these people not like sweet tea or at least offer it as an option for those of us traveling from afar? Why do they have automatic sinks if they will not acknowledge my soapy hands? why can they not have the best IT people? Is that too much to ask - to have the best of the best in medicine and the best of the best in technology? Why do they not have chocolate chip cookies every time I go down stairs? Instead they have cookies plagued with nuts and junk (even the peanut butter cookies are filled with large chunks of peanuts! )! How come they are lacking in their magazine choices to just smut? Why am I not losing weight while still running everyday? I know the answer to that - don't be ugly with your responses. :) How do people find out about this place? There are people here from all over the world. Why am I even rambling when I could be sleeping? Yeah, enough of this. Love you all!

Oh, and sorry for recopying the wrong message under the CGD post. I have fixed that issue, so go back and read if you need to do so and don't get the email.