Finally some good news!!!

Well, actually I'll start with the bad stuff first... Seth came home from school Tuesday with a slight fever around 100.4 I believe, that night he was up vomiting. He continued to run his fever for the next couple of days and had a noticable cough that had began as him clearing his throat and had now turned into a productive cough. Anyway to make a long story short we already had an appointment for Friday at the CF clinic so we talked with the on call Dr and decided to just wait until then to be seen. By Friday Seth's fever was gone and we were ready for the big weigh in!!!! Keep in mind he had had about two weeks of over night feedings and the results were amazing, he had gained 5lbs in that short period of time. I have been trying for atleast a year and a half to do that but just could not. This brought his BMI up from 8% to.... are you ready... 66%!!!! I just sat there with my mouth hung open, I almost couldn't believe it. I knew it was going to be good news because I could see the wieght in his face and chest but I never imagined it would make that kind of a difference so quickly. The only minor concern was that his PFT's were down from 106 to 95 due to some mucus in his lower lobe. The Dr felt like this was mostly due to his missing some vest treatments right after the surgery and of course his not wanting to cough because of the pain. We  are sticking to 3 treatments a day and an oral antibiotics and that should do it. Thank you all so much for your prayers and comments this has been a very difficult time for us but hopefully we can now focus on t-ball coming up and hitting the beach!

A Full Nights Sleep

I am so grateful to have gotten not only one full nights sleep (the first in over a month) but several full nights in a row. We are finally starting to get a hang of this thing. Seth is back in his own room and he too is sleeping much better without the sound of the machine going off throughout the night. A couple little tips for those of you who may have this in your future: even if 1000ml is exactly 4 cans go ahead and put a half can more because some gets caught in the bag and in the tube and if the pump thinks its out it will start beeping and you have to get up and refill the bag and reprime the line which is a major pain at 2am! Also they had originally given us 500ml bags even though he was getting 1000ml a night and we had to set the alarm to get ourselves up before the machine went off and woke Seth, it turns out that there are bigger bags but I guess you have to ask for them?? Atleast that was how it was for us, now we fill the 1200 all the way up even though he only needs the 1000 and it works perfectly! Also, and this is a big one that I felt like the surgen should have told us but didn't, start your child on a stool softener right away. Having to strain right after abdominal surgery is very painful and Cfer's have enough trouble in the bathroom as it is and need no more!!

Hospital Pics

I'm sure you'll understand the time line but these pictures range from our pre-surgery brave face, to sleeping off the meds. Doesn't he look like an angel!

Seth's Struggle

Some of you may know that Seth has been very sick and in the hospital. He has also had to have a feeding tube put in as his BMI had dropped to 8% and his lung function had dropped from 108% to 88%. The scariest part is that we would not have known any of this if we hadnt happened to have a ruitine check up that day. He had been a little sluggish and he's never been a great eater but we had no idea he was sick. In fact we felt like we had been hit by a bus when the doctor came in and said he needed to be admitted to start IV anitbiotics and needs surgery to have a feeding tube put in asap. Aside from him being diagnosed 3 1/2 yrs ago I had never felt so out of control and helpless. This is my son, my baby, my heart and as hard as I try there just seems to be nothing I can do to control what's happening and that is the most sickening feeling a mother can have.
But... with a lot of love and support from family, friends, co-workers and some flat out strangers we made it through. The IV's went smoothe as always and his PFT's went slowly back up to 106% mean while I spent every moment thinking about his feeding tube and how it was going to affect his life. I cried every time he slept because I didn't want him to see how scared I was. It was the biggest slap of reality I had ever had and I just wanted to take Seth and run, as if I could run away from CF. He actually WALKED into the O.R. holding the nurses hand talking to her about school. I just squatted in the hallway crying in part because I was sad and in part because I was proud. It was all over in under an hour and I thought the worst was behind us. I was wrong. I was told that he would be in slight discomfort for a couple of days. That was not true. He was in pain, he was crying and begging to go home. And my son, for those of you who know him, does not do that. They had to up his amount of morphine and he spent the next 24 hours in a drug induced sleep. Needless to say I was out of my mind and looking back i feel very sorry for those nurses who had to deal with me. I can handle a lot, but not my baby in pain. He's just to good a child to lay there in pain like that. The next day he woke up and was feeling better, he was sitting up and talking, playing video games. Our next big feat was having  him get up and walk, and what a feat it was. He didn't want to, he was very sore and unsure, but he did enough  to get us home. Anyway a week and a half has gone by and he is back to normal and has started back to school as of yesterday. He is stronger and more sure of his self then I could ever dream of being. He has no problem showing people or talking about it and he is convinced that his muscles are already bigger from it! We went on Tuesday to get the stitches removed and by their scales he has already gained 2 1/2 lbs! So I can only pray that the worst is really over this time and we will start seeing the benefits of his new "straw". Thanks so much for all your prayers please continuing to think him. ( I have some beautiful pics I will upload when I get a chance.)