my Mom is out of the hospital & in rehab at Duke

just another quick update on my Mom...

in case you haven't heard she is OUT of the hospital! it's crazy!

i posted that last week, but actually set it to post before she was actually out & while i was on vacation & unplugged from the internet.
but yes, she is OUT & at my parents' home they are renting in Durham near Duke hospital.

my Mom goes to pretty intense rehab every day pretty much all day at Duke. she'll have to do that for about 6 weeks and then if all goes well and she makes some more big improvements - she could possibly come home to Charlotte at that point!

She got her new lungs on January 27th and got out of the hospital on April 9th. she was in just a little over 10 weeks.
not bad at all considering they told us in the ICU that she would be in the ICU for months & months... back when things weren't looking all that great.

she made some pretty massive improvements.

hoping for more where that came from.

so excited for my Mom. can't wait for the days ahead...

my Mom is out of the hospital!

she should be by today, anyway!

when we left for vacation on Sunday, the Doctor told her she should be able to come home on Monday! so, surely by the time this posts she'll be home.
"home" in Durham, of course. then she'll do a few months of rehab there at Duke, but at least not in the hospital anymore.

so awesome. we're all so excited.

it's been a long journey, but God has been amazing.

so have many of you - thanks for your support and love & for praying for my Mom!

another miracle for my Mom

i just learned earlier this week about another miracle in my Mom's lung transplant journey.

all along the BIG problem and worry was my Mom's new lungs working. there were all kinds of breathing problems, etc...
when she was on that ECMO machine especially - it was... is she even going to live?

but a while back they noticed she couldn't really move her legs. she had severe muscle atrophy + something else a lot worse that i definitely can't pronounce or even attempt to spell... it affects the nerves and messes them up.

to me at the time this seemed like a very minor issue. like, who cares if my Mom can't walk right now... she needs her lungs to work so she can live. we can worry about walking later.

well, come to find out the Doctors & Physical Therapy team said back then that there was a decent chance my Mom would never walk again.

wow.

i had no idea.

and here now she is walking laps around her hospital unit.

miracle.
blessing.

thanks God.

props to You.

more renown all up on You.

Happy Birthday Mom!

just a quick HAPPY BIRTHDAY shout out to my amazing Mom!

today is her birthday and she has a pretty awesome gift, i think... 2 new lungs that are working like lungs are supposed to work.

she may get her trach out today too - that'd be a great birthday gift.

i asked her a while back what she wanted for a birthday gift & her reply was "to walk & eat."

well, she had her 1st meal since the transplant this past Monday night & she's been walking little by little trying to get her strength back.
That's all you asked for, Mom :)

i know it's not ideal to spend your birthday in the hospital, but Happy Birthday anyway to the most amazing Mom!
i love you Mom & can't wait til you come home.

new lungs & kingdom

God didn't make lungs to go bad and get all diseased like my Mom's did.

he made everything good.

and then it all got jacked up.

there's really 2 ages of time:
1) the one that's been going for thousands of years... it's the one that's jacked up. lungs go bad and people get really sick, etc...
2) and then there's the coming age where everything will be restored and made right.

but ever since Jesus showed up, something crazy and awesome happened. those 2 ages started to blend together. that coming perfect age isn't fully here on earth yet, but we're not just stuck in the old age either because we catch glimpses of that "world made right".
the earth is being restored and you can see it in action sometimes.

Jesus said "I am making everything new." and He is. and we celebrate when we see glimpses of it. those glimpses are the Kingdom of God breaking in. it's a revolution happening now & it's a glimpse of what's coming...

2 new lungs for my Mom is a glimpse of the Kingdom of God. it's not fully here yet or else her lungs would have never gone bad in the 1st place. but it's restoration. it's a glimpse of something that was broken being made new.

and it's beautiful.

Kingdom. making all things new.

God did this for the sake of His fame.
i know, i know... a fancy lung transplant Doctor with a degree from Harvard who now works at Duke named Dr. Lin did the surgery that gave my Mom new lungs. he's an agent of the Kingdom.

high five Dr. Lin & all you Doctors & nurses who have been taking care of my Mom. you are awesome and i'm so thankful for you. but i'm giving God the cred for this. he gets the glory. His renown is spreading because of this.

ever since i was a little kid i've been praying that God would miraculously heal my Mom.
why "miraculously"? because that's the only way, the Doctors said. nothing they could really do for her.
at some point, when i "got it", i started praying that God would heal my Mom (yes for our joy, but ultimately) for His renown. to make Him look awesome. a miracle healing would certainly do that right?

so, which is more of a miracle? instant miraculous healing with no explanation?
OR giving man the tools, genius, and resources to develop this radically new idea of being able to Transplant someone else's lungs into another human body! in order to save their lives?

that's pretty crazy to me.

you tell me, which is the miracle? God healing my Mom miraculously and instantaneously?
OR somehow (beyond Doctors' explanations) keeping her alive these last 10 years until technology, science, and medicine caught up and developed the ability to do a double lung transplant?

my Mom's going to be like a new person. she'll have a new life.

this isn't just another day at the office.

this is Kingdom. God is making all things new. it's breaking in.

and i've had a front row seat for it.

and we can get really excited and praise Him for it.

i know i am.

shocked in a good way (Mom's new lungs)

When i walked into my Mom's room at Duke hospital on Sunday night i was shocked. but for the opposite reason than i was usually shocked.

Every time i had walked into her room before Sunday i was shocked in a bad way. the person in the bed either didn't look like my Mom... or it looked like my Mom on her death bed. both were major bummers & a SHOCK.

Sunday night when i walked into my Mom's room i was shocked in a GREAT way. she looked like my Mom. she was talking like my Mom! she was happy and joking and smiling like my Mom.

it was awesome.

Yesterday one of the Doctors from ICU just came walking by my Mom's room. i remembered her from like the 1st or 2nd day after the transplant... back when things were not good. back when the Doctors were trying to be positive, but...
This lady was the Doctor who told us my Mom was going to have to go on ECMO, etc...

anyway, she came walking briskly by my Mom's room, stopped, and did a double take.
she came walking in with a big smile saying loudly "I didn't even recognize you! you look amazing!"
before she let she said "You made my night. I'm so excited to see you doing so much better."

i think my Mom's pretty excited too. excited to eat. excited to be able to walk a little. excited to TALK!
she's talking like her old self. and she hasn't been able to talk for 2 months so she has A LOT to say!
today she was telling me all about all her hallucinations for the 1st 6 weeks after the transplant. she doesn't really remember much about my Dad and i being there, but she remembers all these crazy hallucinations.

i think they're thinking tomorrow they may try to take her trach totally out! that would be a big deal. pretty soon the only thing left to get better will be the strength back in her legs and she can come home after she walks 20 laps around the unit. she walked 2 laps today :)

great news on my Mom's new lungs!

i feel like i haven't always had great news to share on a visit to see my Mom @ Duke Hospital over these last 2 months.
there have been some scary days.

some hard days.

some very emotional and draining days.

but today was awesome.

my Mom is doing amazing compared to the past 2 months. her lungs are working great. she's now on no oxygen, no ventilator, no nothing. in fact, the Doctors are now saying that the lungs & breathing are the least of her worries!

what?
i asked my Mom if she ever thought she would hear a Doctor say that :)

she looks amazing. she looks like she used to.

i'm so pumped. & my Mom can actually talk now! :) it's not nearly her full voice - she sounds a bit like a 12 year old girl, but it's awesome to hear her voice.

i walked 1 lap around her unit with her today! WALKED... with a walker & 3 of us walking with her. we stopped 4-5 times to take a break but she still made it all the way around. awesome.

her legs are crazy weak. they look (& she says they feel) like spaghetti noodles. it's going to take a while to get her strength back.

oh & she had her 1st MEAL tonight in over 2 months. she was stoked. she ate some lasagna & had some tea. made her day for sure. all in her pretty much regular hospital room. (no more ICU!)

oh & she got to talk to Keira on Face Time.
pretty good day all in all.

way different than a lot of days we used to have. crazy thankful. so thankful to have my Mom back! thankful for these 2 brand new lungs!

my Mom's lungs are improving!

yep. my Mom's lungs are doing a lot better these days.

i talked to her on the phone yesterday and she is sounding great. still just a whisper through her trach, but a LONG way from where she started.
i'm going to see her again in a few days. pumped about that.

she walked about 50 feet today with the help of a walker & a couple physical therapy guys. crazy improvement from not being able to lift her leg in the bed just a short time ago.

she's working so hard. she is a fighter.

A nurse practitioner said again that she might get to go home (Durham home) in as short as 3 weeks! that's how much she has improved! that would be pretty awesome.

thanks to all of you for praying for her & all your support. i can't wait til my Mom can breathe on her own with her new lungs and get out of that hospital :)
i can't wait until she can hold her new granddaughter again :)

my Mom talked to me yesterday! (update)

i TALKED to my Mom yesterday! as in she actually spoke to me.

through her trach of course, but i could hear her over the phone and we had about a 10 minute conversation.

it was awesome.

i hadn't heard my Mom's voice in over a month now. it was really really cool to talk to her.

she also was able to eat and drink for the 1st time yesterday. she still has the feeding tube in, but she's able to eat and drink a little for real now.

she told me all about what she had too - a Little Debbie cookie, some jello, apple juice, milk? i think.
she was pretty excited.

her birthday is coming up March 22 and i asked her what she wanted. she said to be able to eat and to walk. that would be awesome.

she still can't really move her legs much and definitely can't put any weight on them. something to do with her nerves now... they stopped working maybe?

also, 2 nights ago she became "unresponsive". i don't completely know what that means but i know it wasn't good.
i asked my Mom about it and she didn't know anything about it. ignorance is bliss i guess.

long road ahead still but she has come so far!
thanks for all your support

THANKS from my Mom

i was able to spend the last couple days with my Mom and i mainly just want to say THANK YOU SO MUCH!

thank you all for your support and love for my Mom. she knows about it, feels it, and is so thankful for all of you and your love for her.
Thank you to those of you who are praying for her too.

Yesterday i sat with her all day long. and she kept asking me over and over to read YOU GUYS' comments and support you've written to her. All your comments on my blog, the hundreds and thousands of comments on Facebook and her Caring Bridge site, etc... She LOVED hearing all that you guys were writing to her.

probably 6 or 8 times we got interrupted by nurses or doctors coming in and i would put my computer away. as soon as the nurse was done my Mom immediately asked me to start reading your comments again!
it was really cool. it was amazing how much your love and support energized my Mom and how much it pumped her up to hear from you all. i read to her for a couple hours.

she said to tell you all THANK YOU for this outpouring of support and THANK YOU for praying for her to get better and keep improving.

PLEASE keep this coming. say to her whatever you want to say and i will MAKE SURE she hears it from you. you have no idea how great it is for her to hear from you!

and thank you from me too. thank you for pouring out this love on my Mom, for praying for her...
and thanks for all your support of my Dad too! that is huge.
and i feel crazy loved and supported in this myself. thank you. you guys are awesome.

She is doing a lot better. she was off the vent yesterday for 8 or 9 hours and then off it again for another few hours. that's great.
she's doing physical therapy every day and still can't move her legs really. She has to work hard and keep improving her leg strength so she can start walking SO THAT the oxygen in her lungs can start moving a little better.
she's been laying flat on her back for about 18 or 19 days, so her legs are just so weak.

but i was pumped to spend time with her again. she's doing so much better.
she has a LONG way to go and she needs to get a lot better, but she's come so far.

thanks to God most of all. i don't believe any of this would be possible without His healing in her life all these years.

pretty funny story to share about my Mom tomorrow...

update on my Mom's lungs from last night

i'll start off by saying that my Mom is doing SO much better than the last time i saw her here at Duke hopsital! so thankful for that.

i got to spend the evening with her last night and it was a world of difference from the last time i was here with her.

She is off the ECMO (heart-lung) machine which is a big step. there is actually a little bit of room to stand next to her bed in the ICU room she's in because she's not hooked up to as many machines.

she is still on the Ventilator but sometimes they turn it down to about 25% which is great AND they have been trying to take her off of it for as long as they can at 1 time. i think she made it about 8 hours at once. major major progress.

she has a trache in now instead of the vent going down her throat. she's trying to talk like crazy but can't yet.

she is just like her old self. her personality is in full swing and i was loving it. she was trying to joke with my Dad and i last night. we're getting to be pretty good lip readers.

she mouthed that she loved me last night and she was asking about Keira too.

They obviously still have her doped up pretty good - last night she was telling me and my Dad about Paula Dean coming to visit her in the ICU one day. her son "Bobby"? was with her too. haha... i was trying not to laugh but it was pretty funny. not sure if she'll remember that when we tell her later when she's out of here.

they've moved her a couple times to a chair beside her bed. they basically put her in a sling and pick her up and move her.

one of the biggest things that need to improve right now is her leg strength. she can't really move her legs right now. they have her doing physical therapy a couple times a day because they need her to walk. if she can walk it will build some lung capacity back and make her lungs stronger/more oxygen to her lungs (or something like that - i'm not the detail guy).

the GREAT news is that her new lungs are obviously starting to work a little bit now. if they can keep her off the Vent for 48 hours straight they will send her to the "Step Down" ICU which they say is a REALLY big step.

looking forward to that day

detailed update on my Mom's lung transplant

(This post is from Crystal. She is a lot better at explaining details than me. heading over to see my Mom again right now.)

Today (yesterday) was a little bit rougher than yesterday for Edith. The new lungs are not quite ready to work on their own yet. It's hard to say what is expected at this point because there is no "normal" for this. She is on 40% oxygen & is occasionally, but not regularly breathing over the ventilator. Her heart has been having to work harder than normal & she has had some trouble keeping her blood pressure up. Around 4pm she was put on a intraaortic balloon pump (IABP) to help give her heart some rest. Her blood pressure had come up some later in the evening. Earlier in the day they had turned off her sedation drip, but had to restart it this evening when they did the IABP. Gary got a call around 11pm from the hospital letting him know that they were going to put her on ECMO tonight.
I'm trying to give more details than facebook status updates allow for, but it's quite difficult as there is so much going on and most is pretty difficult to explain (I'm digging in my brain way back to nursing school for most of this stuff). For those of you who want to get a mental picture, here it goes. She has the following... ventilator, multiple central lines, foley, 2 chest tubes, 2 JP drains, IABP, oral gastric tube, peripheral IV, cooling blanket, and probably several more things that i'm forgetting about.

Specific things to pray for:
•Cardiac index to improve- should be above 2 & hers has been between 1.6-1.8

•Temperature to come down- she seems to be running a low grade temp. Blood & sputum cultures were sent last night & today to check for infection.

•Lungs to work fully on their own!!

•Pain- she seems to be comfortable while sedated, but i cannot imagine the pain she would be in while awake.