Saturday, September 19, 2009

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!

Friday, September 11, 2009

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.

Wednesday, September 9, 2009

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!!!

Tuesday, September 8, 2009

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"

Friday, September 4, 2009

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.

Thursday, September 3, 2009

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.

Wednesday, September 2, 2009

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.

Tuesday, September 1, 2009

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.

Saturday, August 29, 2009

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.