Saturday, October 18, 2014

Update : 8 days out

It was a rough start after my extended intubation, it was very difficult not to focus on being awake and trying not to pull out tube.  I really had to pray like crazy.  And after I had trouble swallowing and had to have a tube placed down my throat.  That is highly uncomfortable and irritating and made attempting swallowing more tricky. I'm doing esophageal strengthening exercises but praise God I got the tube out a few hrs ago and boy that feels sooooooooo much better.  My nurse also washed my hair today-Elise is a rockstar!
I don't have much of an appetite so just gotta force myself.   The puréed eggs this AM had the consistency of frosting-- yuck! I enjoyed my peaches tho!

Keep praying for daily recovery and hopefully I can get a chest tube out within the next 24hrs!

We can't do this without you and am so grateful for each and everyone of you!

Gotta get out of here, will have a repeat bronch Mon/Tues to clear out that right lung.

Love you!

Thursday, October 16, 2014

Hows life nearly 1wk out?

Almost 1 wk out!
Crazy it has happened! I've read some FB posts asking if I can breathe differently-- I still have 3 out of 4 chest tubes in which roll over my lungs and cause discomfort and trouble breathing. My donor lungs had some 'heaviness" in right lower lobe according to my surgeon- I asked if that meant heaviness from smoking- he assured me no.
He thinks it's from the trauma they had, so they had to take me to bronchoscopy yest afternoon to suck the junk out- the pulmonologist said it was good they did it because they were to thick for me to cough up on his own.
They may return me there pending repeat CXR.
So I hope-pls pray tubes to come out esp my feeding tube as my extended intubation did a number on my throat and vocal cords.  My repeat swallow study is tomorrow.
I will keep walking- I think I walked a total of 13 times and did 5 min on some bike thingy.

Pls pray healing continues and I am so thankful to each one of you who has reached out and has sent us love.


Sunday, October 12, 2014

Day full of success.....

We started the day with the removal of the chest tube!  :)  Then Joyce was able to sit in the chair for the 1st time, a few hours later, and she made it about 45 minutes before feeling too woozy and needed to go back to bed.  A couple hours later, Joyce sat in the chair for just over an hour and then took her 1st walk!!!  It was truly miraculous to see Joyce up exercising those new lungs again....and only on very little (2 liters) of oxygen....and maintained an O2 sat of 96%!  Truly, truly incredible!  Joyce has since sat in the chair for another long stint and gone for another walk.  We are all hoping that she can get some much needed sleep tonight.  

As the day progressed Joyce's blood sugars regulated more and more so they now only bug her every 2 hours for new reads rather than every hour.....have to see even the little steps as, just that, the right direction.  

Thank you all again for the love, prayers, and support all around.....I'll be updating soon.....


Prayers answered......

Just another quick little note to all of you.....Joyce finally got the clearance for the Breathing Tube to be removed!  So exciting.....Joyce was very irritated this morning, so this could not be better news!  Thanks for all the prayers!

Dawn of a New Day

Hi Warriors....sorry that it has taken me a couple days to get back here and is the latest....Joyce received her new lungs and the surgery went really well.  The only hang-up at all was that do to the B.O. Joyce had a lot of scaring on her lungs that caused a lot of adhesions on her chest was just a little harder for the surgeon to remove Joyce's lungs......caused a little more bleeding so they just had to infuse during surgery and have given her a few units since.  Joyce then arrived to her room around 345am Saturday morning and we were able to go see her for a few soon as we walked in the room, the 1st thing that was noticed is how 'pink' and healthy Joyce looked.....her beautiful bod was finally getting the oxygen that it has so badly wanted and been depleted of for so long now.  Joyce then was weened from her vent, around 9am Saturday morning and was then turned off and Joyce was already using her brand new lungs all on her own.  The team here decided that keeping the breathing tube in place was the best route to take because of the fact that Joyce is a very hard intubation and they did not want to have to re-intubate if it was needed....they would rather just use the one that is already in place if needed.  After a few hours of being off the vent, Joyce was put back on to a so that her body could rest and heal more (as most of you know....if Joyce is awake, she is doing something/worrying about something and this is not what the docs wanted yesterday).  Joyce was, at that point, having too much chest tube output and they wanted that to settle down.  After being back on the vent all afternoon Saturday, and after many tests were taken and results read, it was decided that Joyce would be left in a full vent overnight Saturday to Sunday so that she could continue resting and be reassessed in a.m.  At this point Joyce did request to be as sedated again as possible throughout the night as she was becoming more and more anxious and uncomfortable the longer that the breathing tube had been in place.  It is now about 5;20 and the doctors are going to remove her from the vent again, come assess at 7 and if all looks well, get this breathing tube out once and for all!!  Keep up the prayers friends, and I will work my hardest to get back here soon to update you all!  Have a blessed day!  ~Mehgan~

Friday, October 10, 2014

Got the call......
Hi friends, this is Mehgan Ware, I am a good friend of Joyce's and I will be the administrator for this blog for the next (at least) few days.  Wanted to let all you faithful followers know that Joyce received 'the call' right around noon today.  She, Greg and I were then on a plane shortly after 1:00 en route to University of Madison at Wisconsin.  We arrived here around 2;30 (WI time, 3:30 GR time).  Joyce was brought to the floor that she will be on once she is out of surgery and the team on the floor could not be anymore welcoming, caring, and truly all about the patient as a person.....a huge comfort for all of us.  After being poked and prodded at for several hours, questioned like a felon and the lungs were procured and 'cleared' Joyce was taken back into surgery around 7:00 (8:00 GR time).  Joyce was able to vocalize all of her concerns to several different people and they all seemed very open to all that she had to say and we are feeling comforted by that fact and feel that she will be truly kept as comfortable as possible. Joyce was feeling quite peaceful (considering what she is facing) and we truly believe that it is because of all of the prayers, they are being received and felt and it is bringing about a calm that only God's presence can.  Thank you all for these prayers, continued prayers and just for loving Joyce.....she really is something special.

Also, I feel that you all will appreciate knowing that Joyce's personality has already totally shined through and everyone is loving her witty, crazy, sarcastic self.....she had some sort of silly banter with every doc, nurse, transporter, aid that she came in contact with today!

Signing off for now will update as soon as I can/know anymore.....guesstimate right now is 4am to be out of surgery.......

I'm waiting!!

I was going to blog tonight about my great talk I had yesterday in Lansing at Gift of Life, but I got "THE CALL" today at 12:00.

I had just left the Secretary of State office to change my address and I was walking to my car my phone rang.  It was not my scary foghorn ring so I thought it was going to be a routine call.
Well my transplant coordinator is off, so it was another coordinator calling and offering me lungs. Thankfully, Greg was also at SOS office. He was waving goodbye and I was frantically waving at him to stay as I was on the phone.

He was in disbelief as I was-- I called my pilot Randy. Everyone answered as was the plan and I was out of Grand Rapids in a little over a hour!

Ahhhhhhh!!!!! I'm sitting here awaiting this unbelievable event! Pray I make it thru the surgery with a successful recovery for many years.  Pray for the donor - someone has died so I could live. This is heavy but have not processed that thought completely.  I'm only focusing on the now.

Pray for my family, I didn't get to see Eric before I left although I did get to volunteer in his school earlier today.

Every thing has fell into place seamlessly, God is in control.

Love to all my supporters!