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