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!

Proverbs 31:30

We are still here! I'm sorry I haven't written in a while. I would like to just say we have been too busy for me to write but that's not the whole truth. I've been avoiding my blog and having to talk about my struggle and attitude of recent. Never could have I imagined how God would use this blog to not only keep family and friends connected with us but teach me so much about what it means to walk with him as I expose my weaknesses and a constant need of a Savior. So before I begin to explain my absent I just want to thank all of you who read this and thank you for letting me be real and honest with you.



My body has gone through many changes due to my CF and transplant and although I have excepted many of them I was not ready for what was in store for me this fall. Due to catching the swine flu this summer and the toll it took on my body I began to loose my once long, thick hair. I have always been thankful for my hair. I would always say it was the healthiest thing I had and if you asked any of my friends who cut my hair they would tell you they have NEVER known anyone that had such thick hair. Whatever pounds I was lacking on my body I made up for it with my hair. =) It began falling out in September but the doctors felt like it would stop as I regained my strength. However, so far that has not been the case. I spent most of last week in the hospital due to pneumonia and the continual stress on my body caused my hair to really come out. As I lay in bed during my hospital stay I could tell my hair was thinning a lot and I couldn't bare to look in the mirror, and as I fell into depression the Lord kept whispering Proverbs 31:30. "Charm is deceitful, and beauty is fleeting, but a woman who fears the Lord is to be praised." I did NOT want to hear that verse and I pushed away what the Lord was trying to say! I was angry, WHY?! After, all that I had gone through why couldn't have the Lord just let me keep one thing I treasured. I got out of the hospital Wednesday afternoon and I was so embarrassed and angry that I chose to not be with my family on Thanksgiving Day. I wanted to sleep and hide away and so Faith went over to my sister in-laws house and spent Thanksgiving with all of our family while my sweet husband stayed home with me.

Not only did I miss being with our family this Thanksgiving and being far from having a thankful heart for what I did have, I didn't want to see what God was so gently trying to help me see. The truth was He did care about every hair that fell from my head because He not only did He give me all that hair, He knows the number of them (Mt 10:30). Although that had been stripped, He thought I was still beautiful because I am still His child and He was using something in my life to help my heart become more like His. Because, like in Proverbs 31:30, He knows things in this life can be fleeting and He is faithful in helping me become the woman He talks about in this verse. I am far from being the Proverbs 31 woman but with tears and a surrendered heart I can honestly say I pray that maybe...... just maybe my willing heart and faithful Lord will help me become such a woman.

I am getting better from my pneumonia and I am in the midst of trying to get over a stomach bug too but with all that said I am doing better. So, what is my plan from here......well, tomorrow I am going with my mom to possibly find a wig. So, the next time you see a picture of me who knows what I'll look like. =) For all of those of you who know me well, you know it was a HUGE deal for me to start getting highlights, you could say I'm not a risk taker when it comes to my hair but NOW the possibilities of style and color are endless. Jason has always had a thing for red heads so maybe that's in the near future for me.....hmmm......who knows? =)

If you could keep us in your prayers this week as I try to get over this sickness and pack up my house because we could possibly be moving into our new house this weekend! Thank you and I hope your Thanksgiving Day was a great one!

Princess Faith

Well Princess Faith finally had her princess party that she has been waiting for. We bought her a Cinderella dress for her birthday and if we let her I think she would wear it everyday. She puts it on and says," Oh wow, I look beautiful!" And for the past few weeks she tells me that she needs to go to the ball, so for her party we rented a big princess castle jumper. She thought that was pretty special.

Princess Faith

Beautiful princesses~ Georgia (Sissy), Marin & Faith OR

should I say Snow White and 2 Cinderellas

She loved her castle cake with all the Disney princesses

It's hard to believe my little one is 3 years old already!!! My how time flies by so fast!

Princess Bike from Emily Mulkey on Vimeo.

Health update~

I'm doing pretty well. My strength is coming back and I've been able to gain some weight back. When I get tired I have to remind myself that I'm still recovering. I've been able to get back into my Teen Moms group, which I have missed. The next month or so should be a little crazy as we finish up the house and then hopefully be moving the beginning of December. We finally picked the color for the house and thank goodness it turned out great! I'll be posting some pictures up soon. Hope all is well with you during this fall season!

We can't always connect the dots.........

But He does and has a purpose for every "dot", every season we go through. There have been many things in my life, like you I'm sure when you just want to ask, "Where are you going with this, Lord? Or why is this happening now?" I wanted to share some things during my stay in the hospital.

Of course, some questions that I wish I had the answers too are~

• Why did I catch the swine flu?


• Why must many of my trails be physical ones?


• Why did I have to go over a month without seeing my little one?


• But, the biggest question that continues to come to mind is, why did you let me live when so many others have passed away from this horrible flu?

To tell you the truth I don't know the answer to all of these questions, however these past few months have been one of the hardest things I've had to endure yet I experienced the Lord in a way I never have before.

My mother in-law (Mitzi) and my sister were taking care of me while Jason went back to TX for just a couple of days to get Faith and bring her to AL. During this time I struggled to keep fighting, I wrote on a paper (I was still on the ventilator and could not talk) to Mitzi to call Jason and tell him I couldn't keep going on. I had nothing left, my cup was empty and I felt like giving in to the enemies lies that I just couldn't make it anymore. I might have been ready to give in but the Lord was not done and He brought me an "angel" to encourage, strengthen and remind me how much hope I had in the midst of such a difficult time. My respiratory therapist, Monica became my "angel" in some of my darkest hours. I remember asking her after she had anointed me with oil and prayed and sang over me,"Monica, are you an angel" she laughed and smiled and just said, "I just share the message of hope and healing to anyone the Lord puts in my path, that is my gift, ministry". Well, Monica you were my angel and I thank you for sharing your faith and love with me.

I paged Monica several times when I just felt I needed a "sister" in Christ to help intercede for me as I struggled with draws from the high pain meds. She was always ready to pray and ask Jesus to bind up Satan's lies and that I would cling to only Him and that I am set FREE.

"By His wounds I am healed" Isaiah 53:5

After Monica left, I came into a time of worship that I had never really experienced before. As tears ran down my face, I sang and spoke aloud the word of God. I spent that time asking for forgiveness, strength, joy, hope and thanking Him for His grace and that even though I was so weak physically and emotionally He was holding me with much love and compassion. From that moment of giving whatever left I had to the Lord and not holding back, a peace fell over me. The enemy was still trying to whisper those lies to me but NOW I was holding onto the word of God and putting on the armor of God. Satan had no power and the Lord brought "light" and victory in that hospital room that day. There is power in SPEAKING ALOUD the word of God and I'm thankful for Him bringing me to a point where I could say again," Your grace is sufficient for me, for your power is made perfect in my weakness". 2 Corinthians 12:9

So I might not be able to answer all the questions I have but through it all I, the Lord taught me how to praise Him again through the valleys and say,"Lord, I don't like this and it hurts but YET I will still praise you!" For whatever reason the Lord spared my life I want to use it to honor Him and do what He still has planned for me. Thank you Lord, for using a broken vessel like mine.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13

"Shake off your dust; rise up, sit enthroned, O Jerusalem. FREE yourself from the chains on your neck, O captive Daughters of Zion. Isaiah 52:2

So what "chains" are you holding onto? What is keeping you from allowing God to set you FREE. He has already done that we just have to humble ourselves and receive it.

It's good to be Home....

Just wanted to let everyone know we made it home, tired and in shock at how much we had acquired during our stay in AL. But mostly over whelmed with thankfulness. I'm feeling good just "trying" to take it slow because I'm still weak. My to do list seems endless but then again when is life not like that. I wanted to show a picture of the BIG project we are tackling right now......our new home! Since I was in the hospital for several months we haven't made many decisions and now it's coming down to the wire. I love how the house is looking and I'll be posting more pictures when it gets painted and more progress is done. It looks like we will be moving in around December (Yea, right before the holidays)! If you are interested in looking at the neighborhood we will be moving into this is the website. Vintage Township~ http://vintagetownship.com/home.asp. It's one of a kind and very different for west TX. Yet, we love it and it reminds us of the good old south. (Plus I think we will have the biggest garage in the neighborhood.........Jason is pretty proud of that)!

There's no place like HOME!

Yes, we are officially being released to head back to TX! We went to clinic today and my kidney function was down (which is good) quite a bit from when I was in the hospital and my x-ray looks ten times better! The doctors and nurses are in amazement at how well I have recovered and all I can say is, "Praise the Lord, I am still here because of his grace and the many prayers that have gone up for us"! You would think I'm an emotional mess because tears of joy seem to be never far from my eyes. After 12 weeks in the hospital, it's very hard to put into words the over whelming joy I have not just for me but for my family to be going home together.

I had to share this quick story about Faith that I so wish I could have caught on tape. I was released from the hospital Friday evening and when Jason and I walked into the Town House, Faith ran up to me with the biggest smile and said," Oh mama.... you are done with the hospital"! She continued to hug me and repeat that I WAS done with the hospital and that we can go home and of course see Maggie (our bull dog). As you might imagine it took me a while to dry my eyes and just stand in awe of how amazing and gracious our God is.

Amazing grace has a new meaning for me in this season of my life; I was lost and now I am found, I was blind but now I see...........AMAZING GRACE!

We plan on leaving tomorrow morning. My dad is coming out with his big home RV so we can go home in comfort, another huge blessing!

*You can scroll down to the bottom of the blog and turn off the back ground music to listen to the "Amazing Grace" song.

Freedom!!!

Well, I am being released today (at least to the Town House)! My heart just leaps at the thought of getting out of the hospital after a 10 week stay and near death experience. We have to go to Clinic on Wednesday and if everything stays well then we can make our journey back HOME! It's hard to describe my joy because it is just too every whelming! The Lord brought me back from death and though I still have a ways to go with my rehab and building my strength, I feel I have a new hope. My mother in-law mentioned to me that I forgot to post about them taking my trach out a couple of days ago. So I am trach, IV, and the many lines free! I have much to talk about what happened the past few days but I will write soon, just wanted everyone to know we are headed out and THANK YOU, THANK YOU for all your prayers and support. It's hard for me to hold back my tears from the long journey the Lord graciously brought me. Praise His name!

Update

Sorry it's been a while since my last post. My hands are very shaky and so it's hard to type. The past few days have been very difficult for me as I battle withdraws from the pain meds and feeling stir crazy. My whole body shakes and I have a lot of anxiety (due to the very high pain meds they were giving me). I have never experienced such a horrible feeling as this. However, I told the doctor that I think if I could just get out of the hospital and to the Town House (where Jason and Faith are staying) I would do better. So I think they will let me go to the Town House tomorrow. This gives me some new hope as this road has been the most difficult thing I have gone through. I appreciate your support and prayers and I just ask that you would continue to pray for me as I recover (emotionally and physically). I'm slowly getting stronger but it's hard work since I have lost a lot of weight and muscle. I did walk by myself today (praise)!

I'll try to write again, sorry I don't have the strength right now to type very much. Some verses I have been saying aloud are~

• Deuteronomy 31:8~The Lord goes before me; He will march with me; He will not fail me or let me go or forsake me; I will fear not, neither become broken (in spirit-depressed, dismayed, and unnerved with alarm)

A good kick in the pants

I've been very anxious and irritable today. I didn't get my line taken out today because they already had a full schedule, so I might be getting it done tomorrow. So that was a little disappointing and the 9 weeks in the hospital is getting to me. Looking at the same walls, doing the same thing every day and ready for some fresh air. Anyway, I was letting everything get to me and then..............God gave me a good kick in pants. I met one of the other patients on the floor. He has heart problems (not sure all that is going on with him) and he has been in the hospital since February! He was so cheerful and even though I'm sure he is more then ready to go home, he never lend on that he was discontent with his situation. Also one of the patients up here pasted away this morning, young man leaving behind a wife 4 children.
Needless to say my issues seem very small and I needed to be reminded that even though it's been a long journey, I'm doing well. I'm not the only one fighting for life. I told Ryan (heart patient) what an encouragement he is to me.


On a lighter note; the other night was a little eventful. Jason woke up around 6 a.m to use the restroom and as he was walking in the dark to the bathroom he stepped into something wet. After flipping the light on, he quickly realized he had stepped in pee! My night nurse forgot to cap my catheter after she emptied it out and so there was pee ALL over the floor. The nurses were nice to give him some fresh socks. By the amount of pee on the floor, you can definitely say my kidneys are working well, praise God. :)

Good Progress

Just wanted to report the good news. They caped my trach and I am just using the nose cannula for oxygen and tomorrow they will be taking the whole trach out! I also got some other lines taken out (my feeding tube & my catheter). It's so nice to be free of those things.

The difficult thing today is when they tried to take out my central line in my neck (the one they were using for dialysis). I was very nervous about it coming out and asked for some medicine to help relax me but they kept reassuring it was no big deal coming out. Well, after tugging, crying, and pulling they decided my skin has healed over it and so it was more wedged in there then they thought. (I really wanted to say "See I told you!) My patience was running thin with the lady as she tried to make light of the situation and said,"well we can tie it to the door and that should pull it out". Anyway, they will take me to radiology to give me some sedation and pull it but right now I'm left feeling very sore. I ask for your prayers for that tomorrow.

It looks like I might be going home next week! There are just a few things left (getting my strength back is going to take some time). It's hard to believe I've been in the hospital 9 weeks, but though it's been difficult I'm thankful the Lord carried me through, even the days I wanted to throw in the towel. And again thanks to all of you for your prayers, it continues to lift us up.

I love you

It's real easy to take for granted the simple things that we do every day without thinking about it like~talking, eating, walking or needing help to use the restroom. All of these daily things seem simple but I'm having to work hard to become independent again. I tend to not write (type) much because my hands are very shaky however the Lord gave me a gift today and that is talking and eating again. I'll try to explain the processes I'm going through.

First this morning the doctor replaced my trach with a smaller one. Which makes me have to breath more on my own. Also I have been off the vent all weekend and have gone to a trach collar which gives oxygen to my trach.

Jason, my mom and Faith got in early Friday morning. Faith was happy to see me but kinda confused that I wasn't talking back to her so today when they put the speaking valve on and I said, "Hi Faith, I love you" she got a big smile and said,"Mama talking to me"! I couldn't help but tear up when I heard my voice and was able to say I love you to my baby girl. It's been 2 months since I've heard my voice or eaten anything so the next joy was passing my swallowing test and I had some wonderful soup (I think anything would have tasted good to me) for lunch.

My strength is coming back and I'm slowly walking around the nurses station. It's hard work because I lost so much muscle. My legs are very sore but it's good to get out of the bed.

Thank you for your continual prayers, I ask that you would pray for Faith as she has done well through all of this but it's also taking it's toll on her. She asks to go home and see Maggie (our bulldog) every day. Thank You!

When I call on God in the day of trouble, He will deliver me, and I will honor and glorify him. Psalm 50:15

The Good, the Bad & the Ugly

This title is from a movie and one of my husbands favorite actors of all time (Clint Eastwood). Anyway, I thought it fit well for what these past 6 weeks have been like.

The Good~ The Lord saved my life. Many nurses have told me they thought I wasn't going to make it. And my kidneys are doing better, not great but good enough that I don't have to do dialysis right now!

(who redeems your life from the pit. Psalm 103:4)


The Bad~ I did catch the swine flu and so did the rest of my family. I was feeling great and I felt like things were smoothing out and then BAM I got knocked down. I almost feel like I'm starting over with the exception of being on the ventilator this long.

(Why are you downcast, O my soul? Put our hope in God, for I will yet praise him, my Savior, and my God. Psalm 42:5)

The Ugly~ My attitude has been anything but pretty. I am tired of being in bed(been laying on my back mostly for 6 weeks) I was tired of hurting, getting poked, not being able to talk (because of the vent) weak and being away from my baby girl for a whole month. Jason drove to TX and made some decisions on our new house and picked up Faith and my mom.While he was away Callie and my mother in-law (Mitzi) were staying with me. At one point last week I told Mitzi to call Jason and tell him I just couldn't keep going. I was also thinking about discontinuing my blog. I was falling into a deep depression. I want to be honest with you about the not so pleasant things.

(You are the God who performs miracles; you display your power among the people. Psalm 77:14)

To wrap this up I could not have made it without the Lord and I'm thankful he still works through my weaknesses like Moses, Jacob, Peter and Paul. I want to THANK YOU too for your faithfulness in keeping me and my family in your prayers. THANK YOU also for the many cards and gifts, that always brightens my day.

*I am making some progress though, I got up and walked around the nurses station today for the first time in 6 weeks. I'm weak but I'm getting stronger, I've had re-learn to walk and do your normal daily things just because my body has just been laying in a bed for so long and when they put me in a deep sleep (slept through most of August) I had LOTS of dreams that seemed VERY real. When I woke up I was confused about some things. I had to sort out what was real and what was only a dream. It was hard to communicate with anybody because of the vent (which I still do, I do lots of writing). I will some time share the crazy dreams I had, what a journey that was. It was like my mind was putting reality and fantasies together.

Anyway, sorry this is a long post but I felt up to writing today so I thought I better do it while I'm feeling pretty good. Sorry if some of it doesn't make sense, I still feel like my mind is a little fogging sometimes from all the meds (at least that's what I'm blaming in on). I'll try to update whenever I can. Thanks again for everything!

This Past Week

Hello everyone...it's Emily T. Just thought some of you might want a specific update on Emily's progress this week. If you missed the previous post, be sure to read Emily's very own words below. When you move inches but still have miles left, it feels like a very long road but moving forward IS progress and brings Emily that much closer to her goal. Em, don't forget The Tortoise and the Hare. The tortoise wins every time. :-)

Here's the rundown of what I know to share:
* Dialysis is now every other day rather than 24/7...her kidneys are improving
* Her oxygen is down to 40% and her vent setting at 8 I believe. Her saturations are staying in the low 90s which is ok but pray they can be in the upper 90s and stay there.
* She was able to sit in the chair for a few hours earlier in the week...first time out of bed in a long time
* She has been able to skype with Faith almost every day...very good and very hard all at the same time
* She got a new central line (painful) which basically affected the entire day
* She had a bronchoscopy yesterday just to make sure there was nothing there and take a sample culture to test for any growth. Everything looked good and the results will be back in a few days.
* Emily had a fever last night (side affect of the bronch) but it broke this morning...yay!
* Physical Therapy was supposed to come and Jason said the plan was to "get after it"...be praying for physical, mental and emotional strength to push through any pain, discouragement and frustration
* She is antsy to get out of bed and get much further down this road...hopefully a good motivator that the Lord will use. :-)

Thank you Lord for all the big and small ways that you love us, care for us, and provide for us. Thank you for what you have done in Emily and what you will do.

still hanging on

I'm weak but I wanted to THANK YOU for all your prayers. To be honest I have been a wreck this past week with lots of tears, frustration and clinging to hope. I have had some close calls but I think this tops them all. Laying in bed for over a month has left me very weak, not being able to eat or talk with my tube which is challenging, tubes coming and going ever where you can imagine and missing my little girl so much that I cry every time I see a picture of her. Tomorrow is her birthday, we sent her a gift but hopefully we will give her a party when we get home. Also our new home that is being built will be ready in November. I guess we like to do everything at once. Because all of the meds they are giving me I'm trying to sort out what is true and what is false. They were very REAL "dreams" and I'm finding out it never happened. Boy, am I glad some of them didn't!I'm having another bronchoscoy in hopes to clean some of the junk out. I wish I could use this time to renew my relationship with the Lord yet I seem to be dealing from pain to the next and then sleeping when I can (you know how the hospital is)
Well reading over this I feel like I'm just having a pity-party. Well thanks for listening and your prayers. The Lord has carried me since I can't walk either. I will have to re learn how to talk, walk and think straight after I get some of these meds off.
Well I hope some of this made sense but I just wanted to praise the Lord for protected me and so thank you.


*Emily, thanks again for taking on the role of keeping everyone informed. It really helps Jason to not have repeat himself and I'm not much help since I can't talk.

*I hate that Faith and I had to miss your weddings (Jesse,Jared, Spencer). Hope it was a wonderful time!!!CONGRATULATION!!!

No News Is Good News

At this point, if I don't post, I don't want you to worry. ;-) So remember, as a general rule of thumb, that no news is good news at this point.

As Emily becomes continually more alert, mobile, and communicative, the level of care that she needs from those around her thankfully increases. I know that Jason is so excited to be able to see her eyes and communicate with her that there is not really another place he would rather be. This also begins the task of rehabilitation which takes a lot of focus, determination, perseverance and encouragement.

Emily did request Books on CD. She has a computer with a CD-Rom drive so if you have any Books on CD around your house or want to provide one for her, by all means, send them her way. :-) If you need to get the address by email "CLICK HERE"

Making Progress

I'm sitting with Emily as she rests after a good review from the doctors this morning. After getting her hair washed yesterday, it was primed and ready for me to braid it for her. She looks really good and she is making progress!

Her kidney levels indicate that they might be working on their own so the settings on her dialysis have been turned down to be able to test them. Apparently your kidneys either work or they don't work (there is not much in between) so if they begin to work, she would be able to come off the dialysis rather quickly. This could possibly even take place within the next few days so let's pray for that! If she is able to get off dialysis it would also serve her well to begin to move around more quickly rather than trying to mess with another line and another machine.

Her vent settings have also continued to be moved down and she is just on pressure support. The plan is still to move slowly but as she tolerates it, they will continue to wean her down. Timetables are not something the doctors like to be nailed down to, but it sounded like if she continues on her current path, she might be weaned off the vent within the next week or two.

She is also completely off her sedation meds as of this morning. This is another great step as it means she is able to communicate more. The lingering effects are still present but she is very alert and very much getting back to herself. She can write and even typed a little to me but it is still rather frustrating to not be able to speak and be understood easily. Continue to pray for clarity for Emily and for the communication process to become easier everyday.

They have started some basic physical therapy for her...moving her arms and legs...and Jason has been trained to do some of the exercises with her. Pray that she does well with this new addition to her days and that her body can regain strength quickly. Hopefully she can be moved to a chair next week to start sitting up and getting out of bed some.

One of the first things she wanted me to do when I got here was get her internet working and I know it won't be long until she is able to read your words personally and then be back to posting some on her own. Pray for her emotionally as she longs to be with her daughter and will daily face many ups and downs in the days to come. And I challenge those of you who are reading this to not cease to pray for her now that she seems to have come through such a difficult time. I know the tendency of many (myself included) is to get "caught up" in the moment, in the drama, in the uncertainty and then when things become calmer, we forget the people or circumstances to which God called us to minister to or intercede for. God still hears our prayers and Emily and her family still need your support. Thank you for being so faithful during the last few weeks.

Mailing Letters & Cards

For those of you who would like to send a personal note, letter, card, etc., I now have an address for you to mail those to. Also, for those of you who were interested in providing a practical need like food, another awesome item to send would be restaurant gift cards. I found this great site that lists restaurants near the hospital. I'm sure not all of them have gift cards, but I'm sure some of them do. www.blazerbites.com

Also, Faith's birthday is next week so another idea would be to stick a birthday card for her in the mail as a way to love her well and brag on how amazing her parents are. I'm sure it will be a keepsake for years to come.

In order to keep some anonymity for them and since this site has had about 5000 hits since this started, I have set up an email address where you can request the mailing address or ask a pertinent question that is not addressed on the blog. To email, "CLICK HERE". Please be patient with me to respond and if an entire group of people would like information, maybe a designated leader of that group could obtain it and disseminate appropriately rather than each individual requesting it from me.

This is another opportunity to love them well and now that Emily is waking up, I'm sure some notes of encouragement from people who care about her will be greatly appreciated.

Another Good Day

Today is another good day. It feels so good to say that. Emily is more alert, she is now writing some and even "asked" for the computer to type while I was on the phone with Jason. Not sure if that was successful but just the fact that she is trying is huge. She still is not fully herself but it is so wonderful that she simply has her eyes open and is communicating with the world around her.

Her vent settings are down as well with an 8 PEEP level, 40% on oxygen and still just on pressure support. They are still slowly weaning her off of the sedation meds as well.

Let's continue to pray for progress, for clarity of mind for Emily, and against any more setbacks.

Good Day

Today has been a good one with little steps of progress. Em's fever is gone, the new central lines are back in and working well, she is only using pressure support on the vent so she is breathing on her own, they have slowed her sedation drip, and she has been very alert. All in all, a very good day.

They are still taking things rather slowly and want to keep it that way so there are so sudden reactions. Please pray for a smooth path and that she does not have anymore setbacks to coming off the vent completely. She has her eyes open and is able to answer questions and communicate some but is still not quite back to herself yet. It will take some time for everything to come together just right. Keep praying.

Proverbs 3:5-6 Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Lord, in your mercy, straighten and smooth Emily's path.

Fever

Emily made some more progress as the respirator was turned off for most of the day on Sunday and she was responsible for initiating breaths on her own. She did great and they turned it back on overnight in order to let her rest.

Overnight, however, she developed a 102 degree fever and they found that one of her central lines was infected. This was such a bummer to find out as they had to take both central lines our and put both back in. :-( Emily's heart rate also rose again to 170. They put her back on antibiotics in order to treat the infection.

So we need to pray that these work quickly so her fever goes down and so that she does not have to be on antibiotics very long. This is all fairly normal as the longer you stay in the hospital, the more likely infection is to set in.

Baby Steps

Things are still moving rather slowly but there are still some baby steps when you look closely. Emily's eyes have been open for most of the day and seem to be clearer than they have been. Hopefully this is a sign that some of the "fog" is lifting. Jason & Steph spent lots of time talking to her, showing her some videos, and simply engaging with her. She became frustrated at not being able to communicate and her heartrate went up to 160 again which I know is frustrating for all of them. Her vent settings are at 12 for respirations and down to 50% oxygen...another baby step. This is going to be a long road. Pray for patience and for a perspective that finds joy in the simplest of things.

Recovery Day

Emily is rather sleepy today and the team has decided to move a little bit slower because of that. It seems to be more of a recovery day from surgery. She does look better and they have lowered her vent settings to 18 respirations so that she has the ability to take breaths on her own beyond that. Jason picked up a white board so they are ready for her whenever she is able to write. Hopefully this weekend will bring some amazing new stories to share.

Successful

Emily is out of surgery (the whole thing lasted about an hour) and is doing well. Steph said she looked so good without all of the tubes coming out of her mouth. Jason asked Emily is she knew what had happened and she nodded her head yes. They put a feeding tube down her nose as well.

So tonight's goal is to rest and they will start the weaning off process again tomorrow. It does seem a bit strange that this tracheotomy now seems like progress but I think at this point, this truly seems like the best plan and it is definitely nice to not be at a standstill anymore.

5:00 PM Surgery

They took her in early so she is in surgery right now.

Several praises....see earlier post today
* she did not get bumped
* they took her early (the sooner the better!)
* Stephanie just slept for 3 hours and feels so much better

Please pray for the surgery if you get this in time. I'll hopefully get a post-op update later this evening.

7:00 PM Surgery

Emily's tracheotomy has been scheduled for tonight @ 7 PM central time. It is with the main transplant doctor which is great but after waiting now for 3 days, everyone is very ready for this to be over with. If you read this today, please pray specifically that Emily does not get bumped off the schedule for tonight.

Emily has been much more aware over the last 24 hours again and still been very sad. Jason told her about getting the trach earlier this morning and she was pretty sad about that too. Please continue to pray for her emotionally.

She will be put under and taken to surgery for this, probably get a new feeding tube through her nose and will be really sore but if all goes well, they can start the weaning off process from the ventilator tomorrow. The trach is much easier to wean off as they can just disconnect it rather than having to remove the tube.

She had another unit of blood (possibly due to her chronic anemia) which seems somewhat minor at this point comparatively but is still causing problems and her kidneys have still not improved.

Pray for Stephanie as well. She has a cough that has started up and as Emily's mother, watching her the last week struggle so emotionally and physically has really taking a toll on her as well. Pray she can rest well and have the strength that she needs to care for someone she loves so much.

Jason and Faith were able to spend some time together this week which was good for both of them. Jason's family continues to care so well for their sweet little girl. Faith's birthday is in 2 weeks and I have it on my heart to pray that Emily is well enough to be able to truly celebrate with her sweet daughter. Will you pray for that too?

Rescheduled & Answers

Here is the update from today:

They have rescheduled the tracheotomy until Thursday as the doctor that they want cannot do it until then. Emily seems to be responding well to the new feedings and there are some small signs that her kidneys are at least doing something...these are the praises. Emily is now pretty medicated again in order to try and give her some comfort and rest. The vent is now back to almost full capacity as things deteriorated yesterday with very high respiration numbers (not good).

And now to answer some of your questions. Let me start off by saying that I'm glad to keep you informed as best as I can so that you can be praying...although I am no expert in any of this. After walking so closely with Emily through life over the past 15+ years and then through the last several years of giving birth to Faith and the lung transplant, I know how precious she is and how many people love her and her family and have been faithful to pray for her. I do not have any medical background besides what I have learned on my own and through Em about CF, lung transplant, and what is currently going on. I also know how difficult it is for those who are caring for her daily to keep everyone updated personally so my hope is to relieve them of the responsibility so they can concentrate on Emily.

1. Is this all because of the swine flu? This current hospital stay does stem from Emily contracting the Swine Flu although she had other issues like anemia that were causing her some problems as well. With a lung transplant, Emily's respiratory system is extremely vulnerable and with the many anti-rejection meds she is on, her immune system is very weak. So, how you or I might feel with the common cold could set Emily back drastically as her body has a much harder time fighting off the infection. Since this flu was pretty difficult, it took a lot for her body to work to fight and it basically wore her out and her lungs could just not keep up on their own.

2. What is the prognosis? This question is really too difficult to answer right now. I think we all hoped that she would just need to be on the vent to help her recover and fight off the flu, then recover and return to life as normal. She has now been in the hospital for almost 5 weeks and will be on the vent for 4 weeks if they do they trach on Thursday. Emily has been sedated for most of that, which means she has not moved out of the bed for that entire time and has not been doing many of the daily routine functions like walking, eating, etc that she needs to be in order to move on. Her x-rays of her lungs still do not look great and she is on dialysis. In many ways, the prognosis looks...well, bleak...but it is just too early to tell. It is going to be a long road, a long stay, but Emily is a fighter. She has been all her life. She has so much to live for...her God, her husband, her daughter, her family & friends, and her desires and dreams for the life that Christ has given her. I know she desires to honor Him above all things. She has never given up and will never give up until Christ calls her home.

3. Has she been responsive in the last few days? More so than she has been. They reduced her meds drastically but since her kidneys were not working, they did not completely wear off. She was shaking and nodding her head to yes and no questions, squeezing hands, and showing emotion.

4. Are they concerned about brain damage? Was she without oxygen for any length of time? Let me be very clear in saying NO to both of these things. I have not heard nor do I believe that either one of these are likely. Emily was on oxygen as soon as she needed it in the very early days of being in the hospital in Lubbock and the damage to organs that they are concerned about involve the lungs, liver, and kidneys.

5. Are her kidneys functioning? Do they believe they will function completely again? Emily is still on dialysis and all numbers have not shown much improvement yet. However, there have been some signs that they might be functioning at a very small level. The initial report, which has not been changed at this point, is that they think that the major kidney problems are temporary due to the high levels of meds that were going through her body that had been taxing her kidneys very heavily. I think this is still a big question mark and an item for continued prayer.

6. How does Emily feel? Obviously, physically...not so good. I don't know how she feels emotionally because I can't ask her but I have a good idea. I can't speak for her so don't take this as gospel but I imagine she feels exhausted, discouraged, sad, frustrated, weak, and is missing her daughter but at the same time humbled by your prayers, grateful for your friendship and love, and anxious to feel better so that she can continue to live life to the fullest and bless other people. It is always hard for Em to be the one who has "needs". She so desires to encourage, love, and serve others. She also trusts completely in Jesus Christ and finds eternal hope in the truth of His Word. Janna and I were emailing about her and I think what she said sums this up perfectly: "My only comfort today was thinking what Emily would say, that we serve a mighty God who is mighty to save and has, by his grace, given Emily new life in Jesus who is our hope. She is a shining example that God does not promise ease but that He is Faithful." Well said, Janna.

7. Does she know anything? Yes. When she has been on the lower dosages of meds (at the beginning of being on the vent and in the last few days) she has definitely been more aware. I'm not sure what she is retaining and all that she is understanding as the drugs do have an amnesia effect but for certain moments she does know things. When I visited her, I don't even know if she knew that I was there but I talked to her like she did. I doubt she will remember it but you just never know how the spirit, mind, body connection works in each moment. The hard part of the last few days is that she has been crying a lot. Outside of the physical healing that she needs, pray for her emotionally.

8. What is the status of her lungs since she is going on a trach? Why are they keeping her on the vent? Basically, the few days that things progressed and the goal of getting of the vent was within reach seemed to support that her lungs were doing better. However, they chose not to extubate due to the complications with the kidneys and the feeding tubes which made her more unstable. It is hard to know at this point, I believe the doctors don't even know, why her lungs continue to struggle. It could still be lingering effects of the flu, or irritation from the tube...who knows at this point. As much as the trach is not ideal, at this point, it should allow her to at least get off the sedation meds and begin some physical rehab. As updated today, she still needs the vent to help her breathe.

I hope I've helped to answer and clear up some things. I'm not 100% sure that I said everything correctly but I hope it helps. Emily's life is a testimony of God's amazing love and faithfulness and I know it would bring her joy to know that you are pursuing a relationship with Jesus Christ, who died for you and rose again to give you new life in Him, by taking any and all questions about her life and yours to Him. He can handle our fears, our anger, our hopes, our pains, and our pleading requests. Thankfully He is in control...not the swine flu, failing kidneys, struggling lungs, or a discouraged spirit.

Matthew 11:28-30 28 "Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”

Trach

A quick update so you can be praying specifically...I'll update with the answers to your Q and A hopefully tomorrow. Keep commenting on that post if you have questions.

After another difficult day, a tracheotomy is being scheduled tomorrow. Please pray the procedure is succesful and that this major change can end up being a positive move in the right direction.

Pray for emotional strength for Emily. There have been many tears today.

Pray that her kidneys begin to function.

Pray that she would adjust to the new feedings well so she can get some nourishment.

Q & A

In an effort to fill in any gaps about Emily, her story, this blog, the disease, her current battle or answer questions that I have overlooked, please comment with anything that you would like for me to clarify or with any questions that you might have. I will do my best to answer them.



Thanks,
Emily T

Discouraged

I think that word sums up the current situation.

Jason and Steph need prayer as they continue to watch Em suffer more obstacles and have no control of the situation

Did not pull tube, turned respirator back on

Needed blood due to another complication with tubes in stomach

Still on dialysis

Seem to be heading backwards

Please keep praying. God's ways are higher than our ways. I get home tonight and will try and fill in gaps

Did Not Extubate

Not been an encouraging day

Throwing up this morning

Really agitated

Needed lots of sunctioning

Gave more ativan to relieve her agitation

Hard to be patient

Need more time for dialysis to work

Waiting to pull tube until she is more stable

Keep praying

Prayer

Once again, we ask for your specific prayers...this time for Emily's kidneys to start working again.

She has already begun dialysis this evening after continued symptoms of her kidneys not functioning correctly. She has not been on sedation meds for awhile now and she is just now starting to wake up but is still very much out of it.

They had to put in a 2nd central line which is extremely painful and very difficult to watch her be in so much pain. The moments that she does have of alertness are spent reassuring her and reminding her that her job is to relax. She is responding well to her Mom and Jason (I'm not sure who else is there) and holding her hand. Extubation (taking the tube out) is still not out of the picture as her respirations are still good.

So basically the big item for prayer is for her kidneys to start working ASAP. The hope is that this is temporary and simply due to the large amount of stress her kidneys have been under.

Please pray.

Kidneys

Emily is once again facing an obstacle. Her kidneys are not working well it all and she was not extubated this morning. A kidney specialist is being brought on as her kidney levels are close to needing dialysis. She is off of all meds but she is not processing them correctly so she still has levels of meds that she has been off of for 5 days. Extubation has been postponed until the kidneys are addressed. She is still sedated even though she is not on meds.

Pray that they can identify quickly how to help her.

Extubate tomorrow?

Quick update as I am traveling...

* breathed on her own since 9.30 AM
* showed emotion for first time
* she is uncomfortable but ok
* plan to extubate in AM if all goes well

Pray to that end

6 Hours...

...is how long Emily breathed on her own today!!!! Are you kidding me?!?!

They turned off the respirator this morning around 9 AM and did not know if Emily would be able to last a couple of minutes, 30 minutes or an hour breathing on her own for the first time. And now, 6 hours later, Emily is just now getting some much needed rest. They have turned the respirator back on now but she is still having to initiate the breaths on her own. It allows her to rest a bit more and not have quite as much work.

The plan is to allow her to rest for the remainder of the day/night and try again in the morning with the hopes that they can pull the tube either later Wednesday or more likely Thursday. She is still sedated but is now completely off morphine and is now on a "3" for the other drug that helps with her nerves. They were both at 15, so this is a big adjustment. She was fairly alert today with eyes open and interactive which I know was a big relief and encouragement for Jason...but exhausting too as he watched his wife for 6 hours do things she has not done in almost 3 weeks.

She is resting well now so let's keep praying that continues with no interruptions. And let's pray that she can finally move past the need of this machine within the next 48 hours that has been breathing for her and get that tube out of her throat!

Ephesians 3:14-21

14 For this reason I bow my knees before the Father, 15 from whom every family in heaven and on earth is named, 16 that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, 18 may have strength to comprehend with all the saints what is the breadth and length and height and depth, 19 and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.

20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Big Day Tomorrow

Alright everyone...it's one of the moments we've been waiting for. So let's be in prayer heavily on Tuesday.

Emily's sedation meds were cut in half today (from a 15 to an 8...but I'm not really sure what those numbers mean) to begin the process of waking her up. They want her awake enough to receive coaching from the nurses and doctors about how to breathe again with the hope that she can come off the vent. They are going to give her a chance to initiate a breath while she is still on the vent and see how she does. They tried today to see if she would breathe on her own and she did not take a breath when they turned the machine off but she was still not awake at all at that point. It was a scary moment for sure but today, she once again squeezed Jason's hand...YAY!

Right now, the vent is set to initiate her breaths for her but once she is alert and able to take instructions, they will change those settings to allow her the chance to re-learn what it is like to breathe after almost 3 weeks of being on the ventilator. So basically, tomorrow is a HUGE day for her in so many ways and will be a big determining factor of whether they proceed with taking her off the vent or doing a tracheotomy.

Specific prayer requests include...
* Emily to wake up without any of the "episodes" she has been dealing with
* A smooth transition off of the sedation meds (she's been on A LOT) and for there to be no long term damage
* Emily to receive instructions well and for her to understand and reenact what she is being instructed to do
* Patience and teamwork present for all involved
* Emily to initiate her first breath tomorrow
* Progress to be made towards full recovery
* A sweet "reunion" of Emily "rejoining" Jason, her family and friends
* Emily to be encouraged
* Jason & family to have hope & patience and for them to be encouraged as well

Please leave a comment to let them know that you will be praying for them on Tuesday.

Pretty much the same

Emily has basically maintained the same status since the last time I posted. Her oxygen is still at 40% and her PEEP is still at a 5. All in all this is a very good thing. Yesterday during the late afternoon she did have a very random heart rate increase that shot up to 160 to which they had to give her a med to bring it down which made her blood pressure low again. However, they were able to get her stable fairly quickly and it seemed to be an isolated incident.

Jason believes the doctors will probably make a decision on Tuesday or Wednesday to start weaning her off the vent or do a tracheotomy. So let's keep praying for Emily to improve and for the doctors to have wisdom and discernment to make the best decision for Emily's care.

Heading in the Right Direction

There is a big smile on my face as I get to share some encouraging news and some answers to prayer!

Emily's oxygen has been moved down to 40% (where it should probably stay) and her PEEP is down to 5. These are the key numbers that indicate the possibility of coming off the vent! Everything should probably stay the same today but the may take down some of the other machine settings on the vent as well that should make her breath rate go down (another big step in the right direction).

There is not an official plan in place from the doctors to start weaning her off the vent but the nurses are starting to talk about it more and everything seems to be moving that direction. From what Jason has gathered, the weaning off process can take a few days rather than being a quick change so we are still looking at next week at the earliest. And all of this is not a guarantee of getting off the vent but things are definitely much more in favor of that than they have been.

A funny anecdote from today...Emily had the nurses and her Dad laughing a bit this morning. She was kind of awake a little bit today when the nurses needed to move the tube a little bit further down in her throat. This actually happened twice. Emily decided to bite down on the tube so that they could not push it down any farther. When the nurses could get no further they asked her "Emily, do you understand that we need to put the tube further down your throat?" to which Emily nodded yes. "So you need to stop biting down on the tube, Emily." To which in true Emily fashion, she shook her head no. Of course the nurses won but it is so encouraging to know that she is comprehending, making choices, and that even the stubborn part of her personality is shining through. :-)

All in all, Jason is very encouraged and asks that we pray that she continues on this path and that everything keeps heading in the right direction. Yesterday marked two weeks on the vent and three weeks in the hospital. There is definitely a lot more work to do even after getting off the vent involving rehab, etc but it is wonderful to see some drastic improvements right now.

Tim and Jason are both doing fine and Emily's sister Callie may come again. Stephanie will come as soon as they take the vent out to help with rehab. AND, sweet Faith is doing really well too. She has a couple of times a day that she is sad and asks for Mommy & Daddy but grandparents, aunts & uncles, cousins, and the lovable dog Maggie are dong a great job of keeping her entertained and doing well.

So spend some time praising the Lord for what He has done and keep praying for Emily and her family.

Thursday

Quick update...hopefully many more details tomorrow. :-)

Emily's feeling a little bit better today. Her PEEP is down to 10, her oxygen is down to 70% and her O2 sats are staying in the mid 90s. She is able to rest well. The hope is that she is over a hump and will continue to get better. Let's pray to that end. Not much else has changed at this point.

Wednesday

Today was a little bit better than yesterday. Still not much to report. Emily's vent settings are at 90% oxygen and she is back to holding steady in the upper 90s for her O2 saturation which is much better than it has been. This should make it easier for her to breathe.

I'm rereading that paragraph over and over and just not sure what else to say...partly because I don't have a lot more info and partly just because I just don't know how to say anything else. I'm so thankful that Christ paid it all and promises to never leave us nor forsake us.

Romans 12:12 - Rejoice in hope, be patient in tribulation, be constant in prayer.

I miss you Em...but I'm rejoicing in the hope that we'll get to talk to you again soon and the truth that we will have new bodies in our future home...I'm doing my best to be patient in this process by trusting in the Lord and encourage you to do the same even when it's consistently tough (and I know it is)...and I'm constantly praying for your healing, for Christ to work through you, and for a miracle with your name on it.

Tuesday

The rest of the day yesterday continued to be troublesome but overnight last night was much better. Emily got settled down and was able to sleep well. This morning she has been unsettled again and Jason is just hoping it is not a repeat of yesterday. She really needs to have a couple of good days in a row before she can look at getting off the vent. Her oxygen is back up to 80% on the vent so in some ways it feels like she is heading in the opposite direction. It is such a delicate balance with all of the drugs, her vent settings, and her stats...trying to keep everything in the perfect balance is proving to be very challenging. But I know a God who holds her and this entire world in the palm of His hand. Please Lord, hold her up with your righteous right hand.

As I know many of you in the Birmingham area are wanting to help more practically, I asked Jason very specifically if there was anything anyone could do that would be a help and not a hindrance. And as I expected, there just is not much at this point. They don't want to leave Emily for too long, visiting Emily is not really a beneficial option and she does not have any needs that anyone can meet at this point. Jason and Tim are staying in the UAB Townhouse but it is a different set-up than what they had before. There is only a dorm size mini-fridge (no freezer or microwave) and an oven/stove and very, very little storage room. They have stocked it with their basic needs. Trying to coordinate meals or visits right now would probably be more of a hindrance just because it all depends on how Emily is at that very moment which changes constantly.

This all could change and I will let you know if it does. I believe their transplant fund is still active (bottom right of the page) and if you really want to do something now, I would suggest contributing to that. All the money goes towards Emily's medical expenses which as you can imagine, continues to increase. I know it is not a tangible, immediate need but right now the best thing to do is to just pray. I'll try to get an address to where you can send cards and I'm sure their loved ones in Lubbock would appreciate encouragement as well. Another idea for the future maybe some airline miles or rapid rewards that could either get family from Lubbock to Birmingham or reunite Faith with her parents at some point. Everything is a little bit at a standstill until Emily's status changes a little more.

Pray for her lungs to get stronger and continue to fight this infection. Pray that the delicate balance mentioned above can be reached and remain stable for at least two good days. Pray for Emily's future recovery as I know she felt beaten down before this and I can only imagine the battle she will have to fully recover from this. And continue to lift up the family to have strength, patience, endurance, and hope.

Very Difficult Day

This morning started off with some routine hygiene care for Emily that basically set the day in a downward spiral. She became agitated at being moved and began fighting the tube, so she was given some meds to help her relax; which sent her blood pressure plummeting, so she was given some meds to regulate that; which sent her heart rate skyrocketing to 170, so she was given some meds for that...not fun to watch I'm sure.

Things have calmed down some but the team is still working the kinks out of this very difficult day. Please pray for a better night and for there to be some light at the end of this dark tunnel.

Psalm 31

31:1 In you, O Lord, do I take refuge; let me never be put to shame;

in your righteousness deliver me!
2 Incline your ear to me;
rescue me speedily!
Be a rock of refuge for me,
a strong fortress to save me!

3 For you are my rock and my fortress;
and for your name's sake you lead me and guide me;
4 you take me out of the net they have hidden for me,
for you are my refuge.
5 Into your hand I commit my spirit;
you have redeemed me, O Lord, faithful God.

6 I hate those who pay regard to worthless idols,
but I trust in the Lord.
7 I will rejoice and be glad in your steadfast love,
because you have seen my affliction;
you have known the distress of my soul,
8 and you have not delivered me into the hand of the enemy;
you have set my feet in a broad place.

9 Be gracious to me, O Lord, for I am in distress;
my eye is wasted from grief;
my soul and my body also.
10 For my life is spent with sorrow,
and my years with sighing;
my strength fails because of my iniquity,
and my bones waste away.

11 Because of all my adversaries I have become a reproach,
especially to my neighbors,
and an object of dread to my acquaintances;
those who see me in the street flee from me.
12 I have been forgotten like one who is dead;
I have become like a broken vessel.
13 For I hear the whispering of many—
terror on every side!—
as they scheme together against me,
as they plot to take my life.

14 But I trust in you, O Lord;
I say, “You are my God.”
15 My times are in your hand;
rescue me from the hand of my enemies and from my persecutors!
16 Make your face shine on your servant;
save me in your steadfast love!
17 O Lord, let me not be put to shame,
for I call upon you;
let the wicked be put to shame;
let them go silently to Sheol.
18 Let the lying lips be mute,
which speak insolently against the righteous
in pride and contempt.

19 Oh, how abundant is your goodness,
which you have stored up for those who fear you
and worked for those who take refuge in you,
in the sight of the children of mankind!
20 In the cover of your presence you hide them
from the plots of men;
you store them in your shelter
from the strife of tongues.

21 Blessed be the Lord,
for he has wondrously shown his steadfast love to me
when I was in a besieged city.
22 I had said in my alarm,
“I am cut off from your sight.”
But you heard the voice of my pleas for mercy
when I cried to you for help.

23 Love the Lord, all you his saints!
The Lord preserves the faithful
but abundantly repays the one who acts in pride.
24 Be strong, and let your heart take courage,
all you who wait for the Lord!

Full Update

Hey everyone. Thanks for continuing to pray and care for this sweet family. Emily is holding steady in the HTICU @ UAB in Birmingham and there will probably not be a lot of changes in her status for the next 24-48hrs. The team or doctors and nurses are keeping her comfortable and sedated and feel that it is best right now to just let her rest.

As I expected, it was bittersweet to see Emily. Of course it is difficult to see someone you care about so much in circumstances like that, but at the same time, it was SO wonderful to get to see my precious friend, hold her hand, and tell her I love her face to face. She is basically non-responsive because of her meds but it is good to know and remember that it is drug induced and not reflective of how she is actually doing overall.

The results did come back positive for swine flu but she is almost complete with her rounds of antibiotics. Since the media has done a very good job of making us all very scared of the swine flu, just remember that it is a flu, just a different strand, and that Emily is getting the care that she needs. More than likely, the others in the family that had the flu also had swine flu but since she is more susceptible to respiratory illnesses, it has a different manifestation in her body. Dr. Young, who apparently is very careful with his words, did say that he believes that she will pull through this but that it is just going to take some time.

Emily's vent settings were better today and although her respirations per minute, heart rate, and PEEP numbers still need to come down, they are doing a good job of keeping her stable. She has still had a few "episodes" where she will get a little panicky and her heart rate goes up, her respirations go up, and her oxygen saturation goes down. It does seem to me that it is now not as difficult to get her to stabilize as it has been and I believe it still tends to happen when her sedation meds are running low. The doctor said this morning that it will be a very quiet day for her as they are purposefully just wanting her to sleep and rest and will continue to move her vent dependence down after another day or so.

We were able to get Jason out of the hospital for some BBQ last night and Emily's Dad, her sister Callie and brother-in-law Hayden should get there later tonight. Faith is missing her parents, of course, but is doing well overall. They moved Emily out of the acute level ICU so Jason can stay with her overnight now and he now has a place in the UAB Townhouses so he can switch out with Tim and get some sleep.

I think that is it for an update. For the next 24 hours, I think the best prayer would be for Emily to rest, stay calm, and for her body to be preparing itself to come off the vent.

Thanks~Emily T

Quick Update

I'm in Birmingham on my husbands blackberry so this is short and sweet. I'll update with more details tomorrow. Emily is stable, not much has changed for better or for worse, and it is swine flu. Keep praying.

Settled

Just talked to Jason and they are now settled in Birmingham. He mentioned several times at how amazing the staff was when she arrived. From the moment they wheeled her down the corridor, they were all over her doing just what she needed. The transition to getting her hooked up to everything could not have gone any smoother. Jason himself seems so much more relaxed and at peace as well. The staff at UAB just knows what they are doing and how best to care for her.

She is on 70% oxygen and holding steady at 98 for her O2 saturation. He doesn't know yet when they will start trying to wean her down again but it will probably be soon. She is still in the low pressure room and will be until they figure out the results from the H1N1 flu. Jason was not able to stay with her last night but is now in the townhouse next door and once Emily's dad gets there tomorrow, they will be able to switch out to have someone stay with her at all times.

This will probably be the last update until tomorrow night or Sunday as I am leaving to go see her as well and am unsure of my ability to update the blog or when I will be back. Let's keep praising God for what he has done and ask him to continue to work a miracle in her body. Pray that she makes significant improvements this weekend.

In Birmingham

Tim, Emily's Dad has called to say that the plane landed and that she is now at UAB and in a room in the most acute intensive care unit aka "Emily's home away from home" :-). She had one episode in Lubbock as they were loading her up but it sounds like the rest of the transport went smoothly. UAB sent their own transport team and transport plane, came in their special 'jumpsuits' looking very professional and competent but I can only imagine the gut wrenching feelings going through the family members that were watching her go.

If you know Emily personally, you know the profound impact that she has on people and I believe both hospitals have come to love and care for her deeply. Tim asked one of the doctors in Lubbock this morning as they were discussing the possible transport: "If this was your daughter, what would you do" and after thinking for a minute responded with "I would transport her to Birmingham." The concern is that since she has been in the hospital for 2 weeks now, the risk of secondary infections increases and if something else were to set in, it is best for her to be at UAB where they are used to treating a myriad of things for transplant patients.

My hope too is that Emily will relax at UAB more because it is familiar with her. She has been there so much that she knows the doctors and nurses and they know her. She also knows many of the patients that come in and out and there is this amazing sense of community there because of all that they have been through together. I know that there is a sense of trust that Emily feels by being there that she has not felt before with other doctors and hospitals. I'm praying God uses this in her favor.

THANK YOU for praying tonight! I know the family appreciates it as do I. God is so faithful and it encouraged me tonight to see each time slot covered and to know my very best friend was being prayed for by so many other friends.

A couple of other updates:
* I think the ultrasounds of the liver, kidneys, and gall bladder to not show any significant findings
* The biopsy of the lungs did not grow anything
* They know for sure she has the flu but have still not confirmed about the swine flu
* Faith is sleeping and eating well and after Jason explained to her about what was happening today, she said "Ok" and he left without a major crying episode.
* Please lift up the family in Lubbock tonight who are now so far away from her. God knows no boundaries but the physical boundaries of this earth are sure frustrating at times like this.
* Jason cannot stay with her in this section of the ICU so pray for rest and good sleep for both of them.

Emily, we love you and miss you and cannot wait for you to get better. Don't give up fighting. We are all pulling for you. God, protect her and be with her tonight as only you can.

~Emily T

LifeFlight

Emily is being life flighted from Lubbock to UAB in Birmingham today at 4:30 PM. The flight should take 4 hours. How about we try and cover her entire transport in prayer from start to finish? Let's start at 4 PM and end at 10 PM. Sign up in the comments with a 15 minute block of time to be on your knees for Emily. I'll take the first block from 4-4:15pm.

The meeting this morning included the 3 doctors that are overseeing Emily's case. Dr. Young at UAB and two doctors that are new to Emily's case in Lubbock. Jason and the family have made it known that they would prefer to stay in Lubbock if at all possible but if it is better for Emily to be at UAB they are more than willing to move her. The decision was made this morning they believe there is a slight advantage to her being at UAB that is worth the risks of transporting her.

As much as Emily made progress yesterday from where she had been, she really has not been getting any better. And with being on the vent for one solid week, she really needs to be improving in order for things to progress and the possibility of coming off the vent a reality. So far, she isn't moving that direction. Jason mentioned that he is looking forward to having a new set of eyes and a new perspective for Emily's case. You just never know what a fresh approach can do.

Jason will be able to be on the medical plane with her (huge praise!) and Faith will be staying in Lubbock. Depending on which room Emily is moved to, Jason may or may not be aloud to stay overnight with her.

Don't forget to sign up to pray for 15 min from 4-10 PM.

Progress

Things looked more positive today and Emily has medically made some progress. She is now at 40% oxygen on the vent which is back to where she was before all of the episodes. Yay! They have also identified that she does have a flu strand of some sort and should find out tomorrow what type and if it is swine flu. Because she has the flu, she has been isolated and doctors and nurses have to scrub up before they go in her room. Also, her PEEP number (I'm really not sure what this is...Katey might could comment and let us know) has been at a 10 which is not too good but today it dropped down to a 5 which is much better! If she can maintain these oxygen/peep numbers, they can do a CPAP test which basically means giving her a test run at breathing on her own to see about taking her off the vent.

There has been some more talk about her needing to make progress now that she has been on the vent for about a week. Apparently the time limit for being on the vent is 2 weeks and at that point she would be looking at a tracheotomy which is definitely not ideal. There is a meeting in the morning that will determine the next course of action from here. If she had not made the progress she made today, I believe the level of concern was going to be a lot greater and life-flighting her to Birmingham would probably have been next.

A few specific prayer requests....Jason to stay well (he started feeling 'something' earlier today), for her numbers to stabilize, for Emily to stay CALM, for her to continue to make progress.