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.

A New Day

Although Emily has not made any drastic improvements, she is not getting any worse. Thankfully she had no episodes overnight, her vent dependence has been moved back to 45% and they are hoping she will stabilize there. She is not quite back to where she was prior to these episodes and it is still a very serious situation, but it sure feels like some good news for this new day. Keep praying for her to fight and for this infection to be overcome.

Faith slept through the night and although her world has been turned upside down, she seems to be doing ok this morning. Her cousins are keeping her entertained. What a blessing to live near them.

Sickness continues to be an issue for the family so keep praying for it to not spread any further and for everyone to recover quickly. Keep praying for Jason to stay well too and for strength for him.

For the Alabama crew...the plan is to keep Emily in Lubbock if at all possible. The UAB team is overseeing the Lubbock team and there is nothing different that UAB would be doing at this point. If that changes, Dr. Young at UAB will not hesitate to life-flight her to UAB. It sounds like the team that she now has in place in Lubbock is actually doing a very good job. Emily has always struggled with doctors and getting the right care that she needs so if it is going as well as it sounds, this is a big praise. She feels most comfortable at UAB but when given a choice before she was put on the vent, she did not designate a preference. I know it has to be so much easier on those caring for her to be in Lubbock.

Keep Praying

...for Emily to fight and for her body to keep fighting against this infection

...for her continued episodes today to stop as she is now heavily sedated to try and prevent them

...for Faith who misses her Momma, that she sleeps well tonight at her Aunt & Uncle's house and that her cousins do a good job of providing joy and distraction from what's going on

...for extended family who is sick to get well so that they can care for and support each other well and for those that are healthy to remain that way

...for Jason to have strength, patience, courage and hope as he provides continued care for Emily

...for there to be improvements tomorrow and encouraging news

...for God to continue to be glorified in Emily's life

Jason & Updates

I just spoke to Jason and he is extremely grateful for your prayers and asks that everyone continue to cover them in prayer. He was able to go home and get some sleep last night and Stephanie stayed at the hospital. Tim, her dad, will be staying with her tonight so that he can sleep again and be with Faith at home. He is doing well for what he is facing as usual...he always amazes me and am I so grateful that my closest friend has such a loyal companion...but it is always better to sleep and to trust God. He has had to once again lay down his control and trust God's control of the situation and there is amazing peace that comes from that.

Emily has had a couple of episodes (one at 3 AM and one earlier today) where her oxygen saturation went down to the 70s and they have had to increase her dependence on the vent back to 100%. She was able to get down to 40% last night and they are hopeful she will get back to that soon but are allowing her to recover from a couple of tense times earlier today. Jason thinks but is not sure that it is related to the anesthesia/amnesia drugs they are giving her. When those get low, she starts to panic and her heart rate rises which leads to some rapid breathing and thus the low sats. Hopefully the drugs will work so that she doesn't have to remember any of this.

The good news is that she is not on any sort of decline and they are still optimistic that she can reduce her dependence on the vent and continue to make progress. Hopefully this is just a bug that needs to run its course and she can get on to recovery soon.

She did have an ultrasound of her liver, kidneys, and gall bladder today to check for damage to those organs. Jason specifically asked that we pray for there to be no damage to them. It is really good that she was able to get off of the harshest drugs but with the many medicines that she is on and her continual battle with CF, the liver and kidneys especially are vulnerable to damage and deterioration. Let's pray that she can get out of this with a miraculous set of organs that will continue to help her in this fight. Let's also pray that she has an episode free night and that by this time tomorrow she is back to 40% dependence on the vent.

Initial Results

Sorry for the delay in updates today. A little earlier this afternoon the initial results came back from the biopsy that there is no rejection (HUGE praise!), and that there is no fungus present (another HUGE praise!). Because of that, she has been able to get off of some of the stronger meds that are so harsh for her kidneys.

She has continued on the vent/oxygen around 50% capacity which basically means she is doing about the same but no worse. She has slept most of today and emotionally she still seems frustrated at the lack of ability to communicate well and from just being so restrained from the vent but the word anxious has not been used as much to describe her.

So let's keep praying for good test results but for the doctors to identify the true cause of all of this, that she continues to rely on the vent less and less by her body healing, and for emotional strength and endurance for Emily. Also keep the extended family in your prayers as well. Several of them (Faith and Emily's Mom for sure) have been sick. I'll try to get a better update on how Jason is doing as well but I know as Emily's faithful husband, that the physical and emotional toll on him is massive as well. Pray he remains healthy and that he is able to love Emily & Faith well through this when he is giving so much. Thankfully their entire family is in Lubbock to help support them.