Tuesday, February 19, 2013


Last Thursday morning I woke up to this little face giving me a good morning look.

And then I saw some pretty flowers on the dresser, some candy too. Yum, nice way to start my day!
And yes, it was Valentines Day...we generally don't really celebrate it, but we did get engaged on Valentines Day many years ago! I found a ring in a box of long stemmed roses that day...

We had to get moving as I had a clinic appointment AND my IVs were stopped. Time for a break! My PFTs  really haven't changed and my Dr think it's my new baseline. He doesn't anticipate them really going up. It really does make a difference when they're under 40%...however, I definately am feeling better than I did five weeks ago, and I'm breathing better...so that counts too! It's not always about the numbers. But now its a challenge to me to get them up! It was a rough five weeks, but I'm slowly coming back, although I do feel pretty fragile yet! I have gained a few pounds (I'm sure with the help of prednisone)...I want to eat all the time, especially dark chocolate sea salt caramels. So I just do it! We have a new frozen yogurt place in town that I've been hearing good things about...can't wait to try that out! I took a most wonderful shower the next day (with O2) Best.Thing.Ever! That's always the best thing about having your port de-accessed! Hubby is still struggling with his issues, I can't wait until his appointment with the gasterontologist in a couple of weeks! He is slowly going back to work a few hours a day. I like having him around a little more, but he needs to heal and gain weight back!

Wednesday, February 13, 2013

All wrapped up and snow

The night before I went into the hospital, Jeremy's family came over with a wrapped gift. What?? They said it was an early Mothers Day gift and they decided to give it early because I hadn't been feeling well, so they thought I should have it now. I opened it and it was this beautiful big soft throw with pictures of my family on...how cool is that? Nothing like being all wrapped up in your family! I put it on my list of things to bring to the hospital when I was admitted....It was a great conversation piece for the nurses! I spread it out across my bed at home to take the pictures, which didn't turn out great at all with the lighting, but you get the idea...it's nice to cover up with during the day when I'm resting.

Beautiful roses sent from Florida from Dad and Sue. Thank you guys...I thoroughly enjoyed!

 Last week we had several inches of snow...the littles wanted to come shovel snow for us. It was fun watching them "working" so hard. I made them some hot chocolate to drink outside.

Cute little faces...

Friday, February 8, 2013

5th week

Yesterday was a CF appointment, across the street from the dr  I saw the day before. Two trips to Akron back to back were a little exhausting! JoEllen had taken me and she came back and watched me do PFTs. My highest was 38% FEV1 .89L. I was wheezy again, and it was decided to do one more week of IVs. Also more prednisone...I've only been off of it for five days! I was a little bummed because I've never done IVs longer than four weeks, so I was expecting to have my port deaccessed. And I was picturing a lovely shower. Instead, port needle was changed, bloodwork done, and meds delivered for another week. Well, I'm just thankful I can do them in the comfort of my home! During my appointment JoEllen went to the hospital cafeteria to get something to eat and got me some oatmeal raisin cookies...they were the best part of my hospital stay. I probably ordered them about every day. Wish I had the recipe! Cant wait till I feel like baking again! But for now, I'm more into resting and napping.

 Warren is feeling better, but not great. I think it will take awhile. He is on several meds and a bland diet for now. He is going to try to go to work a couple of hours in the morning next week to see how it goes. He's not really too great at being a patient. I guess it's a man thing. What a crazy month this has been!

And now I see they're naming winter storms...Used to be blizzard of 78 or whatever. Now we have Nemo...a cute little fish name storm.

Wednesday, February 6, 2013


Warren is home and I am very happy he's back! Jeremy brought him home as Stephanie and I were leaving for a dr appt...so our paths crossed fleetingly. He had a colonoscopy and scope done yesterday which showed that he has some very impressive ulcers in his colon. The dr said he's not seen anything like it in years! He didn't know how he could even have been eating anything, period. They did biopsies to see the type of ulcers. Also the scope showed acid and gas in stomach and bile leaking in too, causing problems. He's being referred to a gastroentologist and has an appt in a couple of weeks. Of course I'll be researching all this over the next few days.

I saw my immunologist today and had bloodwork done to check IgG levels and t-cell levels to see if  my gamma gard treatments are helping or if I'll need to increase dosage. Tomorrow is a CF appt and I'll probably get deaccessed and will stop IVs, I usually don't do more than a month at a time. I've started losing my voice, just squeaking...my dr today thought it's probably a virus. That's it, SOOO glad we are both home together and hoping he takes it easy for awhile...he's not too good at doing that!

Sunday, February 3, 2013

Oh boy

Now hubby is in the hospital. Jeremy took him to the ER last evening, he was in quite a bit of pain. He was very severely dehydrated so they started IV fluids, gave pain med, took X-rays, bloodwork. He ended up being admitted, is on two strong antibiotics and fluids. He can't have anything at all to eat or drink. Morphine for pain. His intestines need to heal! Quite the pair we are right now!

I had a CF appointment on Thurs. my PFTs dropped again just a little...I was hoping to get higher than last week, but just didn't happen. Maybe because I haven't been using O2 as much? Also, my appt was pretty early, I didn't get all 5 nebs done before we left. I'm still on IVs until my Thurs appt, then I'll probably be done for now. Overall feeling better, just slow to do anything. Not that I do much now anyways. I'm going to have someone take me to see him in the hospital this afternoon between my IVs.

Lindsay's doing her clinical boards today...I keep thinking of her too!