Be still before the Lord and wait patiently for Him

It's been a rough 48 hours as I can't even get out of bed to walk to the restroom without dipping into the low 80's with my oxygen. I've got quite a bit of pain as well. So far everything that they have tested for (samples from the bronch) have come back negative which is a good thing yet not a good thing at the same time. They believe it is still a pneumonia and so I'm on 1 antibiotic and a couple of inhalation meds. So not much has changed but we continue to pray the Lord will give the doctor's wisdom to know how best to treat this infection. So far nothing seems to have worked and I've gotten worse the past couple of days. Not sure how long I will be in the hospital although I know I won't be going home this weekend. As you think of us in your prayers please not only pray for physical healing but emotional strength. It's hard to describe your emotions when you live with a terminal illness and when you are tired physically you can't help but feel beaten up emotionally. Pray for Jason has he has so much on his plate and I feel like he never really gets a break. I will be the first to say I don't understand God's ways but He calls me to trust Him and so that is what I'm trying to do. As long as Peter focused on Christ he could walk on water, it was when he let the circumstances around him become more important then focusing on Christ did he begin to sink. Though I continue to walk through the storm of physical trails I pray the Lord will help me stay focused on Him and not the uncertainties that surround me. We appreciate all the prayers and encouragement you give. Thanks!

"In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation." Psalm 5:3

It's a waiting game

Well they did the bronchoscopy yesterday but of course it is too early to tell anything for sure. My doctor said that he could tell there was some kind of infection going on though. However, like most bronchs in the past it has left me feeling even worse today (a lot more pain, very short of breath and I was coughing up some blood this morning). I try not to dwell on all the what-ifs and the fact that I'm not getting better but right now we just don't know a whole lot. I've been praying that the Lord, who sees all and knows all would help bring to light what we need to know to hopefully treat it. Even though my doctor's are puzzled, I know nothing is hidden from the Lord and so I just pray He will give them the wisdom to know which path to take.

I keep up with another CF girl (http://livinglifebreathlessly.blogspot.com) who got a transplant almost 2 years ago and her most recent post she talked about being admitted to the hospital and that it had been the first time she was back in the hospital since transplant (2 yrs). First of all I am so happy for her and amazed at how well she has done but it is also hard to understand why some do really well after transplant and for others it continues to be a daily battle.

Faith enjoys being at the hospital especially when the hospital dogs come around to brighten up the patients. You know how much she loves dogs so she was beside her self having 3 dogs in the room. She kept saying,"they are soooo cute! They want to kiss me!" She thinks every dog should be her best friend. =)

Hanging on.....

Once again I apologize for not staying in better touch, one of my excuses is that AT&T can not get their act together and get us going with our Internet so I've been going over to my sister in-laws house to check my e-mail. Besides that our life has been very busy crazy with Christmas, 4 birthdays, family staying at our house during Christmas and trying to get settled into our new house. Our Christmas was a very nice one and it was a breath of fresh air to be able to spend it with all our family and not in the hospital. However, I am back in the hospital this week. I've never really felt better since my last visit to the hospital and I've just continued to get worse. I'm coughing a lot, shortness of breath and pain in my chest. They think they might have found a fungus in my lungs but they are also not sure if it is really effecting me. The treatment to help this fungus is very toxic and hard on the liver and kidneys so they don't want to do the treatment unless they have a better understanding of how it might be effecting me. They plan to do another bronchoscopy tomorrow but as of right now they don't have any answers for the way I'm feeling. It's been frustrating and discouraging as I feel like I am back to where I was before transplant. I'm not sure if the H1N1 has damaged my lungs permanently or if this is something I can get over. I'm not sure what God's plan is in all of this and we just continue to ask for wisdom and grace. Please pray we would have peace and joy in this situation. Thanks...

Ok, on to more interesting news..........
I thought I would share Faith's most recent adventure..........hanging on.....at least to the garage door! The other day we were headed out and as we walked to the car to load up I pushed the garage door button to open it and walked around the car. Faith ran the other way around the car and before I got to the car door she began to scream! I had no idea what had happened so I rushed to the back of the car and couldn't believe what I saw! My daughter had grabbed the garage door and it had pulled her up and she was hanging in mid-air. She was not about to let go and her little hands were hurting from holding on. I grabbed her and after comforting her began to explain that we never do that because you will fall not to mention could break the door! So now every time we go into the garage she says, "I have to be careful of the garage." I'm just glad it was our 8 ft high door and not the middle door that is 14 feet high!

Also, we ended 2009 with a bang! I'm so proud of Jason and Brandon (my brother in-law) for working so hard to meet their goal in the Chick-Fil-A business. We are ranked the #1 Chick-Fil-A in the chain! We had the strangest Christmas because it snowed (we never get snow around Christmas) for several days and it really killed our sales so we weren't sure if we were going to make the goal but somehow by God's grace the last two days of December we were busy crazy and made it! Very proud of them!!!

Well, I promise I'll get a picture up soon of our house but we have really enjoyed it and it's more then I deserve or could hope for. Hope you had a wonderful Christmas and that 2010 has started out on a good foot for you.

Going Home

I'm getting out of the hospital today! I'm still not where I need to be but I can do my IVs and treatments at home..............our new home! I still appreciate your prayers as I continue to try to get well but very thankful to be going home.

We also have some other great news. Brandon and Christie (my brother & sister in-law) were able to finally adopt Georgia (Sissy)! It's been quite a journey trying to keep her but we are so thankful the Lord provided the way for her to officially be apart of our family! Georgia and Faith sure are good buddies so it's a huge blessing to have a good cousin close in age. Our new house is right by Brandon & Christies so I'm sure they will be playing all the time now. =) We love you, Georgia!!

Success

Thanks for your prayers......they were able to get the PICC in! The PICC sure saves me from lots of sticks! I'm going to really try to get out tomorrow and go home on IVs, I'm hopeful my doctor will agree. Yes, Katey my doctor here wants me to get a port but they won't do it while I'm sick so I have to get over this and then I'll come in to get one put in. Most people are surprised that I don't have one but it's only because I've never wanted one and held out this long but with being in the hospital so often it probably is the right step to take. Anyway, thank you again for your prayers and I'll let you know what the plans are for going home.

Pray for success with PICC

It looks like I will continue my hospital stay possibly through the weekend. I'm feeling a little better but not a huge improvement right now. Also my veins are pretty used up and my arms are sore and black and blue due to all the IVs this week so I think they are going to try to put in a PICC line because I'm running out of options for an IV access. As you know it's never easy to put IVs or PICC lines in so I would really appreciate your prayers for that. I'm not sure when they will be trying to get one in today but I'm hopeful it is soon as I haven't had a working IV since 5 this morning. I am so ready to be home and I'm hopeful that if they can get this PICC in then I can go home on IVs.



Please continue to pray for my sweet hubby as he has so much on his plate right now. Our CFA store is trying to hit our goal of 6 million (we would be the first store to accomplish this). So between trying to work at the store, living between houses, caring for Faith (our family is helping a lot with her) and me and finishing little things on the new house, it getting to be a little overwhelming.

Thanks for your prayers and I'll let you know how today goes.

A good place to start....

Hmmm, either the Lord in some way (which I can't imagine) finds me faithful and so I continue in these physical trails OR I'm not learning my lesson and so I have to re-take the class over and over again. Whatever the reason my be, I'm continuing in this season or valley of sickness and it's been difficult to "praise the Lord". Although I've never been strong physically, the Lord has always provided a strong fighter in me mentally and I think that has helped me get through many things. When I had the H1N1 flu this summer the doctors and nurses were very surprised at how much sedation I needed to keep me in a "coma" to be still. But, they reassured my husband that was also a good thing because I was fighting. Although it's been very difficult physically I feel like Satan has attacked me mentally this round and more then I would like to admit I have let him whisper lies of defeat. I've tried to write down the blessings in my life during the hard times so I can focus on that instead but I have not done it this time around but Emily T. reminded me that it would be a good place to start for my mind and heart.


Romans 12:21 ~ Be not overcome of evil, but overcome evil with good.

I do believe speaking and writing out the word of God and the blessings He has given you is more powerful then just thinking it. You are putting into action overcoming evil with good. So here is a beginning list of what I'm thankful for. Maybe, you are having a tough month, year or Christmas season I encourage you to write your blessings either on your own or on my comment page so you can SEE there is always beauty even in the dessert.

I'm thankful for~
*My husband who is so patient with me and tenderly loves me through every season we have gone through.
*My daughter who gives me a reason to smile when I can't seem to find one. Her sweet voice when she tells me I'm going to get better and that she loves me gives me strength to fight for her
*All of my family and friends who pray for me, are patient with me when I'm not fun to be around and help Jason and I in so many ways!
*Our new house that I'm looking forward to living in
*The good conversations I have had with my brother, Tyler while I've been in the hospital. I'm not sure if we would have had them other wise.
*Not dealing with rejection right now
*My new red wig, hehe
*The Lord prolonging my life this long and how He has been able to use my CF to help others.
*My dear, sweet friend Emily.....my angel who knows me so well and for some reason still loves me and stands by me through thick and thin.
*My family who cheer me on and give so much to me
*The Lord giving me new lungs to live with
*The Lord never giving up on me
*and to all of you who follow our journey through this blog. You prayers and encouragement are so uplifting to us.

Tuesday update

Well, I don't have a lot to report. It doesn't look like rejection at this time but they are sending the reports to another lab to make sure. They believe it is a pseudomonas, pneumonia. For those of you who know my CF history pseudomonas is the main problem I had. I could never fully get rid of it and it caused much scare tissue. Anyway, I don't really know how this all plays out with my new lungs but it definitely is growing in my lungs and causing pain, low oxygen and coughing. I am on IV antibiotics right now but as of right now they don't seem to be doing very much in helping knock this out. It's been a frustrating and draining time for the both of us. My body is worn out and at times I don't know just how much more it can take but like we have seen before God can still do miracles.

I'll update anything new as we hear.

Back to the hospital we go....

Just wanted to give everyone a quick update. I was admitted back into the hospital on Friday due to coughing and low oxygen. The doctor did a bronchoscopy on me yesterday but we probably won't know the results till Monday or sometime this week. My transplant doctors seem to think it's some kind of infection however my doctor here thinks it might be rejection. They have started me on 3 antibiotics but it's too early to really tell if they are working or not.

Jason and friends and family moved most of our stuff into the new house on Friday, which was nice to get done. Our holidays never seem to be normal or easy and this year is proving to be no different. I know it's a small thing but I haven't been able to put up my Christmas stuff or go buy a tree this year because we were trying to get moved in and now with me being in the hospital I'm not sure if it will get done. I love doing Christmas things with Faith so it's been hard. As always I pray that this is not my last Christmas either. There has been a lot going on I think we are all ready for a season of rest.

Well, I will give an update as we get them. We appreciate your prayers......

*I shared this story on my facebook but I thought I would go ahead and tell it again for those who are not on facebook. It's fun to see Faith grow in her understanding of things and have more in depth conversations with her. However, I'm not always ready for what may come out of that little mouth.............. We were rushing around trying to get out the door and Faith was not obeying and moving at the speed of a snail and I lost it and snapped at her. As we drove to our destination, I was frustrated with myself for snapping at her and I knew I needed to make amends. I very calmly apologized and waited for her response.......and this is what I got.

Faith: "I not talking to you.......you need to go in time out!" Though she was probably right I needed to take a time out, her response caught me off guard and it was hard not to laugh.

Oh my........RED!

Yep, you guessed it........I am now a red head! I never thought I would change my hair color but as I'm finding out life has lots of unexpected turns. My mom and I went last week to the wig store and when we got there she asked me what style or color I was thinking. When I told her I wanted to see what red would look like she was quite shocked and I could tell she thought I was a little crazy BUT when I tried one on she changed her tune very quickly. It was even more interesting when I tried on a blonde one and we both thought it washed me out and that the red really looked better with my skin color and eyes. With my new do, I thought we should head over to the CFA and see if my husband noticed me. When we pulled up to the store, he was standing out in the parking lot and so Faith, my mom and I started walking toward him. He looked at me and quickly turned around but after hearing Faith say, "daddy! daddy!" he turned around again and you could see he was confused to see his daughter...... but with a red haired lady. It didn't take him too long to figure out his daughter had not been kidnapped by a strange woman and he got a big smile and kept saying, "wow....oh my goodness......wow.....you look so great.....I can't believe you really went red!" (If you remember from my last post Jason has always liked red heads so I probably never would have done it if it weren't for him) =)

So, for the rest of the day I enjoyed showing off my new do. I gave my sister in-law, Christie, quite a shock as I walked into her house and she thought, "who is this strange woman just walking into my house!" It's been quite humorous walking up to my family and friends not acting like anything is different and they looking at me like I'm some stranger that knows them but they don't have a clue who this person is. I about gave my brother a heart-attack when he walked into my house and I was cleaning dishes and all he saw was me from behind. He said he had to make sure he was in the right house or confront some stranger in my house. Over all I think most people like it and I have really enjoyed it. So, if my hair comes back maybe I will have to turn it red. I told Jason the red unfortunately matches my temper better then blonde so maybe I was suppose to be a red head all along. ;)

*We have had some unexpected problems come up with the house so we weren't able to close on Monday but hopefully we will this week and move maybe over this weekend. I'm so ready to get in so I can put up our Christmas stuff. I'll try to get a picture of it up so you can see how it looks now!