Friday, July 31, 2009

Staycation

We are nearing the end of our stay at home vacation. Warren goes back to work on Monday. We have just been relaxing here at home. We TRIED to pretend we were in Florida, (Audrey even brought some shells over) but it didn't work! We did rent some movies (watched 7 Pounds last night), read books, he did soduko and we ate out a few times. He went to see Cindy at Cleve clinic a few times. She did get moved to Wooster rehab this past Wednesday evening. We are so thankful for that!! He rode his cycle to see her yesterday. She has to start from square one again in rehab, but she is feeling pretty good overall...hope she has no more setbacks!!! I went with him on a cycle ride for awhile one warm afternoon and we might go a little today after my noon and 3:00 IV's are finished.

I had a clinic appointment on Wednesday. My pft's were down a little more from a week ago...FEV1 38% and .97 L. And I practically KILLED myself to hit that!! I was not happy :( I also sounded tight and really wheezy. Prednisone (40mg) was added, along with an anti-fungal drug. I hate the thought of the steroids again, because it's difficult to sleep at night, but it should give me some energy??? I just don't like energy at 3 am... The home health nurse came yesterday and changed my picc dressing and did blood draws. I wasn't as wheezy yesterday.

On Tuesday we did take Kayden and Perrin to the Lodi outlets just to ride the train. They loved it. I can't take pictures with my camera right now because I can't find my battery charger. Drives me nuts, I've looked everywhere! I WILL find it...So we took Stephanie's camera and took a few pictures, but now she can't find the cord to let me download the pictures to my computer. So I have no pictures to offer... The train ride is $3.00 for adults and kids under 3 are free. It's a pretty big train and you can ride unlimited times from noon till evening. There was also a small playground there and they climbed and climbed and went down the slides. Kayden is cautious, Perrin is fearless...really needs to be watched! It was a fun couple of hours!!

Friday, July 24, 2009

Glitches

I had my picc line put in on Tues. It went in fine, but when they x-rayed to see if it was in the correct position, it had gone up in my neck. So they had to power wash it with saline to try to flip it the right way. Luckily, it worked! The infusion nurse came Wed. afternoon to start the IV's. I'm on ceftazadime every 8 hrs. and tobramycin every 24 hrs. Wed. evening, I noticed a funny feeling in my tongue and lips, which got worse yesterday. No swelling, just an annoying numb feeling. Then my face started feeling numb on the left side, as well as my hands. The nurse came at 6:00 to do a blood draw for the tobra. I told her about the weird feeling. She called my dr. who said I should go ahead and do the night IV of ceft, but call if it got worse. Today, I had several calls from the infusion nurse and also Chris, my PA from clinic, because my blood showed high levels of the tobra, so they wanted me to skip todays dose. They are lowering the tobra dose, the new meds came tonight and I am to do them every 48 hours instead of every 24. They called later and changed it to every 36 hours. The high levels were causing the numb side effects and it's definately better now, since there was no tobra today. That was all probably boring to read, but those were my glitches with the IV stuff so far!

Cindy is still at Cleveland Clinic. Her kidney levels are coming down to normal again, but she is still getting lasix by IV. She is hoping to move back to Wooster rehab next week. Yesterday Warren was at the clinic much of the day. Obama also made a visit to the clinic. Warren said security was really tight. And no, Obama didn't even stop in to visit her...

By the way, you have probably seen the you tube jk wedding entrance?? Made me smile :)

Tuesday, July 21, 2009

Bummer

I had a CF appointment last Friday and things were not so good! My pft's dropped...FEV1 was 41% and .96 L. My shoulder joints, hands and knees also hurt really bad. I basically feel like I did last summer before going into the hospital. So I need a few weeks of IV's again. We are ready to head to Akron to get my picc line put in. I'm just happy I can do the IV's at home. Hopefully they will perk me up a bit!!

Monday, July 13, 2009

Today

I just finished my last inhaled Tobi for the month. I just feel like my treatment time takes forever when I have to add Tobi!! So now I get a whole month off and I'm happy... feeling the need to celebrate somehow...I'll think of something. Today is going to be a blueberry day. I'm picking off my bushes and I'm also buying a bunch to freeze for any future smoothies. And I'm thinking blueberry scones might be good.

My dad is doing well, he has to wear a neck collar for 8 weeks, which will probably drive him nuts...but at least the pain from the herniated disc is pretty much gone. He came home on Saturday. Cindy was moved back to ICU for a bit, but is back in her regular room again. She had 500 cc's drained off of her right lung yesterday. Her kidney levels are increasing too (not good), so they are keeping a close watch on that. The plastic surgeon talked to her last week about surgery to close her open wound with skin grafting, but she adamantly says no more surgery. I don't really blame her, she's had so many surgeries...but I don't know what other choice she has. The dr. will talk to her again this week. Warren and Tiffany were to see her yesterday. I rested all day, it was a good thing...And so now I'm off to get blueberries...

Wednesday, July 8, 2009

Summer

Summertime, and the living is easy hectic. Whoa, I'm excited, that's the first time I've crossed out a word! This has been another crazy summer! Other than running back and forth to the hospital a lot to see Cindy, here are a few summery things we've been doing...

I have two blueberry bushes that I planted three years ago. This year I'm really getting a lot of them. I love it! We planted another one this year. I LOVE blueberries...the taste and the fact that they are high in antioxidents. I make a smoothie almost every morning and it includes blueberries! I'm also imagining a blueberry pie in about a week. I also have red raspberry bushes and I'm getting some nice big raspberries too. Kayden asks "let's go check the blueberries and raspberries" every time he's here. He'd eat all of them if I'd let him! We ration...

I love my hydrangeas!

Knockout roses.

Bee balm.

Kayden's first experience roasting marshmallows over the fire pit. He was really into it, very serious about getting it just right!

Oh, the concentration...(and see Perrin walking back there? He's doing that pretty good these days.)

We put them together with some Keebler fudge stripe cookies. His first s'more (sorta!) Pretty good! I bought some chocolate covered grahams for next time.


Another first, batting. His first tries were with the bat held upside down, holding the big part, but then he got it and was so proud when he hit it!



Stephanie and I took the kids to McDonald play place one day. They loved it! Such fun to be a kid...Steph went through it one time and got all hot and claustrophobic! And that's NOT her behind Kayden!

Riding on one of Great Grandpa's minature horses on a Sunday evening.

And then they went "fishing" in the pond.

These last few pictures were taken at Winesburg park. We got pizza and took it to the park and then had fun on the swings and slides. The boys both loved the slides.



Update on Cindy...she had another surgery last Thursday. Because her sternum bone didn't heal at all, they made a flap with one of the pectoralis muscles. They had intended to use the other one as well, but it didn't reach, so they had to extend the incision 6 inches longer, and use a fatty muscle called the omentum for the other part of the flap. She was in pretty bad shape last weekend...really miserable... but is now doing a lot better. The top 12 inches of her incision is still open and on the wound vac. She is now out of ICU and in a regular room.

And just to keep life from being too boring, my dad is having surgery on Friday for a herniated disc. I'm just praying it will go smoothly and he will have NO complications. It's really been quite a summer!!!!

BTW, our neighborhood is having a garage sale this Friday and Saturday. So I am having one too. But, since he's having surgery, I'll be at the hospital. I had wanted to really go through stuff and get rid of things, but no way did I have time to do that. But, if you live around here, you really should come and see all the great stuff that Stephanie has brought to sell...you need to come and stock up. You'll be glad you came!!! Seriously....

Wednesday, July 1, 2009

Cindy update

They did not do the flap thing on Cindy during surgery Monday, just cleaned out some more infection. The wound is still open and on the wound vac. She is on the ventilator and they will take her back into surgery again either today or tomorrow (they will call us) and then clean it out again and make the flap from muscle in her chest, then they will close it up. I'm going to stay home until they call because it's about a two hour drive and there is really nothing I can do, since she is very sedated now. Warren can't get off work this week because of others taking vacation. I rested all day yesterday because I was really tired, but feel better today. So I'm going to get some laundry done because chances are, I'll be in Cleveland tomorrow.