Thursday, May 30, 2013

Three Week Recap

I'm gonna start off by apologizing . . . I blogged about this huge thing happening in our life, asked for prayer, and then haven't written an update in three weeks.  My bad.

In my defense, there has been a lot going on {understatement of the year} and I have updated facebook quite often, but I realize now that not everyone who follows the blog and has been praying for us are my friends on facebook.  I'm sincerely sorry for the silence!

Day of Surgery

It is hard to even write this because May 8th seems like it was months ago and honestly that whole day is like a blur to me.  A very amazing blur, though!

Chad had to be at the hospital for 5:30 am and had the chance to pray with his mom for a minute before checking in, which I think put both of them a little more at ease.  Even at such an ungodly hour, we already had friends starting what would quickly become our takeover of the surgery waiting area.  Chad's surgeon asked me the day before if I would have any support during the surgery {bahahaha}.  I assured him that I would probably have a village worth of family and friends by my side.  I was right.  :)

From 5:30am until 10 pm when Mrs. Tina was finally done, we had somewhere between 40 and 50 people come by to truly be the Body for our family.  I don't have words for the impact this made, not only for our family, but on others in the waiting room and on our coordinator and surgeons.  {Mrs. Tina's surgeon came out at 10 pm to speak with Mr. Boone and was shocked to still see at least 20 people waiting with him . . . he said we definitely win the award for the most support!}

And that is just the people who were able to physically come to the hospital.  There were literally hundreds of people who were calling, texting, and sending facebook messages that they were interceding on our behalf.  Again, I can't explain how crucial this was for us to make it through an incredibly long and emotional day.

At one point during the day, Lisa and I {best decision EVER to have my bff there to care specifically for me . . . she rocked it} started playing a game to bring a little distraction.  I mentioned that I felt guilty that I wasn't praying each moment, but I just couldn't go there emotionally.  I felt like I was one small step away from completely losing it and focusing my mind on what was really happening in the OR would certainly push me over the edge.

In wisdom, Lisa reminded me that I didn't need to feel guilty . . . prayers were constantly being lifted up.  The Body was stepping up to do what I couldn't in that moment.  I don't know if I've ever been more grateful for God's design of His Church and the fact that we are truly unified to each other by the Spirit.  
So for those who interceded on the day of the surgery and in the days since . . . thank you!

They expected the surgeries to take 5-6 hours, but both ended up being more like 9-10 hours.  This made a long day even longer and caused a little more anxiety as we waited.  Thankfully our coordinator, Jeanne, came out every few hours to give us an update.  At the end of the day, the surgery went perfectly!  Chad and his mom were both transferred to ICU.  Then the real journey began. :)

Mrs. Tina's Recovery

Chad's mom was so sick going into surgery, maybe sicker than we all realized, which has had a drastic impact on the timing of her recovery.  Honestly, we've realized that some of our expectations on what her recovery would look like were not realistic and have caused some disappointment and concern.

Before the surgery, the doctors told us that when a recipient wakes up, up to 90% of their previous symptoms might be gone and they would feel better than they had in years.  This was the picture we had in mind.  

In reality, this is very true internally.  Mrs. Tina's new liver is functioning perfectly and all her liver numbers {except bilirubin} look great.  Her bone marrow is producing blood again.  Her swelling is far less than before.  There has been a drastic change and many previous symptoms are gone.

What we weren't prepared for was that it would take three days for her to wake up from the anesthesia.  We weren't prepared for her to experience so much confusion once she finally woke up and even still three weeks in to her recovery.  These things are evidently normal because of the fact that she was in liver failure, which had already begun to effect her brain.  The doctors haven't been overly concerned and assured us from the beginning that these issues would go away in time.  The problem was that we didn't really expect them in the first place so they hit pretty hard.

Mrs. Tina spent 5 days in the ICU before she was able to be transferred to the TSU {transplant step-down unit} and actually moved into Chad's room right after he was discharged.  Her liver numbers continued to be good, but her bilirubin {the level that makes you jaundice} was still high and actually began to increase.
The doctors ordered a scope and found that some of the bile ducts in the liver were blocked, which was causing the bilirubin to remain high.  They put stints in the blocked ducts and expected her numbers to drop immediately.  This didn't happen and the doctors were honestly puzzled.  Mrs. Tina's bilirubin was at 18 {1 is normal} and the doctors planned to do another scope last Thursday to check for more blockage.  We called out for prayer because we desperately didn't want her to have to go through another scope.  She would have to be sedated again, which would mean another few days of her just trying to really wake up instead of being able to move forward in her recovery.
We prayed and God answered!  Mrs. Tina's bilirubin began to drop so the scope was postponed.  It has continued to drop and is now, just a week later, at 6.4!

She has been more alert and able to start focusing on standing and walking, which is no small task when you've been so sick and weak.  The other main focus in her recovery right now is eating.  Mrs. Tina wasn't able to eat as she struggled to really wake up, so they have used a feeding tube the last two weeks to get her the nutrition her body needs to recover.  Now we are really encouraging her to start eating . . . and offering to bring her anything she's craving!

Walking and eating are the two main milestones she needs to reach before she can be discharged from the TSU and moved into an apartment near Ochsner.  She'll remain there for a couple of weeks so she can be close to Ochsner in order to get frequent lab work and doctor visits.

Thank you to everyone who has prayed, called, texted, and visited to support Mrs. Tina in her recovery.  Also thank you for continuing to encourage Mr. Boone and Mrs. Tina's parents as they care for her.  It is overwhelming and exhausting to be strong and care for your wife and daughter and they have truly been carried by your prayers!

Chad's Recovery

Not. What. We. Expected.

Seriously, we were way off.  We expected abdominal pain.  We expected fatigue.  
Our expectations were more like "forced down time" and less like the "Man Down!" that we've experienced. :)

The hardest parts of Chad's recovery have been the peripheral issues that we weren't really prepared for . . .

The fact that the morphine Chad was given in the 48 hours after surgery made him itch until he was literally going crazy {and me with him}.  The second night, I had to scratch him to sleep.  All. Night. Long.  We were only two days in and I was sure I was about to have an emotional breakdown because I physically couldn't stand by his bed and scratch his back for another minute.  

The unbearable shoulder pain that evidently comes from them having to pull on his ribs and move things around during surgery.

The constipation.  I'm not going to go into detail, but if you've talked to Chad you've no doubt heard about this battle . . . during surgery he evidently lost the filter between his brain and his mouth and has been oversharing . . . my apologies!  All I'll say is that I've never prayed for poop so much in my life.  And after a week of intense pain, I've never rejoiced over poop like I did then!

The nerve pain in Chad's arm that sent us to the ER in the middle of the night because we thought he had a blood clot or was having a heart attack.  Nope, just the fact that his arms were in one position during the 9 hour surgery and his nerves were damaged.  Might have been nice to know!  This pain took days to go away and made it hard for Chad to even think, much less sleep.

The insomnia . . . brutal.  And if you've experienced insomnia, you know that this can be the thing that pushes you over the edge.  Chad's body needs so much rest in order for him to recover so to be so exhausted, but unable to actually sleep is just too much.  This has produced frustration and anxiety in Chad in the last week and has really taken its toll.  {But it is 10 am as I type this and Chad is still asleep . . . Praise the Lord!}

To top it all off, Chad and I both got food poisoning at lunch on Sunday.  Thank the Lord my parents were in town because they cared for us and the kids for two days while we struggled to rejoin the land of the living!  Food poisoning is awful as it is, but can you imagine throwing up three weeks after your abs have been cut in half?  Miserable.  

Then of course there is still the abdominal pain and extreme fatigue like we expected. :)
 And to wrap it all up with a nice little bow of heartbreak, we've had this conversation 200 times a day, every day . . .
Grayson:  Daddy pick me up?
Chad:  No buddy I can't.
Grayson:  Daddy's bobo hurting?
Chad:  Yep, my bobo still hurts.
                                            Grayson:  Awwwww. {Shaking his head and often with tears.}

Grayson has finally decided that sitting next to Daddy will be sufficient for awhile!  The kids have been such troopers through all of this, but it has definitely taken its toll on them.  They miss being able to wrestle with Daddy and be picked up.  They love having him home, but it almost makes it harder since he hasn't really be in a place to engage like normal with them. 

Chad is recovering well, but as you can see, the past three weeks have been so much harder than either of us anticipated.  But God has been so gracious so see us through . . . giving me the strength to care for Chad {and two kids} and giving Chad the strength to push through the hard.

I had memorized Colossians 3 the month before the surgery and now I know why!  Verses 12 - 14 were my constant prayer as I fought the flesh that threatened during exhaustion and discouragement . . .  "Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other, as the Lord has forgiven you, so you must also forgive.  And above all these put on love, which binds everything together in perfect harmony."

God has been most gracious through using His Body as His hands and feet.  Our faith family has loved us well.  Meals, playdates, grass cutting, prayer, encouragement . . . we couldn't have made it without this service and love.

Thank you to everyone who has prayed and continues to intercede on our behalf and serve our family!

It is still just absolutely amazing that doing a living liver transplant is even an option.  I didn't realize this until after the surgery, but Ochsner is . . .

Photo: We saw this sign when we driving into the parking garage at Ochsner Hospital to visit Chad Gilbert (who gave part of his liver to his mom in a living donor transplant). We felt a lot better than we would have if it had said something like "in the top 100" or #147 or some such thing.

We believe it!  Chad and his mom have received the most amazing care through this entire process!  The surgeons, doctors, nurses, and everyone in between have been outstanding and such a great support to our whole family.

This was our request as we headed into surgery three weeks ago . . .

Please pray that as the Body of Christ loves and serves us in sacrificial, radical, and practical ways, the watching world will ask "Why?".  And when they do, pray that we will have the privilege to share with many the life changing Gospel that gives us Hope even in pain and uncertainty and is the fuel for the way the Church is loving us!

This prayer was answered!  God did provide many opportunities for us to share with people in the hospital about the God who led us to this point, the Great Physician who we trust is in ultimate control, and Jesus who gives us the strength to endure.

One of my favorite moments was coming to Chad's ICU room the morning after the surgery.  He was so out of it from the morphine!  He was trying so hard to share the Gospel with his nurse, but said that all he could get out was a slurred "God loves the world!"  I love this man!

Thankfully we've had many other chances {without the drug fog} to write notes of appreciation to  those who've taken such good care of Chad and Mrs. Tina, to bring baked goodies to the transplant team, and to proclaim God's goodness to anyone who will listen!

Again {I know I sound like a broken record} THANK YOU to everyone who has walked with us on this long journey!


  1. Cole,

    I definitely teared up at this post. My heart hurts that this has been a long, hard road. Please know that we are continuing to pray for you all. May we, as the church, be a blessing to your family as you all have been a blessing to us. We love y'all!


  2. Dear Chad and Cole,

    Thank you so much for updating your blog. It was great to talk to Chad yesterday. The second I hung up I called my son, Matthew, and said you will never believe who I just talked to. He was shocked and elated. I hope I didn't upset you by calling. Chad we will continue to pray for you and to specifically pray for sleep and rest. Mrs. Tina we pray you will start to eat which will renew your strength daily and promote quicker healing. Cole we pray for you as well that God will give you tender mercies to get through the rough times ahead. We also pray for your strength and health. May you feel wrapped in God's loving arms.

    Love, hugs,and prayers.

    Cindy Blackwell