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!

Tuesday, May 7, 2013

Surgery, Recovery, & Prayer

I've been meaning to write more details about this journey since I wrote the first post about Chad's opportunity to donate part of his liver to his mom.  And now it's the day before the surgery and I have a to-do list 10 miles long!  

Honestly, most of it won't get done.  And surprisingly I'm okay with that {shocker to you who know how much I love scratching things off a list!}.  Instead of cleaning and organizing, Chad is currently on an adventure walk with our two cuties, we spent all morning with them playing in the pool, and their Daddy is picking them up for hugs and kisses as many times as possible. :)

But in the middle of our last "normal" day together for a while, I did want to give some more details to the hundreds of you who have been praying and encouraging us already!

Tomorrow is the big day!  I can't explain the anxiety that sits just below the surface in our hearts and minds.  We've been able so far to calm our fears with the Word and what we know is true about our God.  Please pray that this Peace will continue {especially so we can get some sleep}!

Chad's mom was already admitted to the hospital today to have certain things done in order to get her body and blood ready for surgery.  Chad has to be at Ochsner for 5:30 am tomorrow and they expect the surgery to begin around 8 am.

The surgeries for both Chad and his mom will be about 5-6 hours, but they will overlap.  Chad's surgery will begin and once they physically see his liver, they will make the final call about whether the surgery can proceed.  {There is only a 5% chance that they will for some reason have to stop . . . please pray for no surprises.}

After Chad has been in for about 2 hours, and if they give the green light, Mrs. Tina's surgery will begin.  Our transplant coordinator, Jeanne, has told us that the transplant is like a beautiful dance.  There will be 3 surgeons with Chad in one OR and 3 surgeons with his mom in the OR next door.  She said that the movement of Chad's liver to his mom and all the steps before and after are seamless, with perfect timing, and done almost without words.  

Please be praying for these 6 men.  Pray that this "dance" will be the greatest performance of their lives!  I wrote Dr. Reichman, who is Chad's main surgeon, a note yesterday just letting him know that we are praying for him.  I know that doctors have to develop the ability to turn off everything else when they walk in the OR.  I also know that this has to be easier said than done!  I'm praying for peace in his life and family, for good health, and for good rest especially for tonight.  

I also shared with Dr. Reichman that because we are followers of Christ, we belong to a family much larger than just biological.  I assured him that hundreds of people will be praying for him and the other surgeons and nurses.  I hope this brings him great comfort . . . although it might have just freaked him out!

We would be so honored if you would intercede with us tomorrow!   Say a prayer when we come to mind or when you see a facebook update.  Maybe set an alarm on your phone as a reminder to lift our family up to the Father.  However you can join us in prayer will be such a blessing to our family!

Tomorrow will be a very long day, but really just the beginning.  

God willing, it will be the beginning of new life for Mrs. Tina!  She will most likely wake up with 90% of her symptoms gone and feeling better than she has in years!  She will be in the hospital for 5-7 days and then will have to remain in an apartment close to Ochsner for about 4 weeks.  Her recovery has a much higher risk than Chad so they like to keep transplant patients very close.  She'll have to have lab work done multiple times a week and see the doctor often as they monitor how her body is coping with the new liver.  Please pray for a smooth recovery, that her body won't reject the liver, that her medication {some of which she'll have to be on for life} will be regulated quickly, and that her spirit and faith will remain strong.  Pray also for Chad's dad {Boone} and the rest of the family as they care for Mrs. Tina during her recovery.

For Chad, however, it will be the beginning of a lot of pain.  :(  He will probably wake up feeling worse than he ever has before and will be in the hospital for 4-7 days.  The surgeon said that there is a 30% chance of complications and that if this happens, it will most likely be during the surgery or in the first week.  Please pray against any complications {infection, internal bleeding, blood clots}.  Needless to say, I feel like I'll be holding my breath for a week! 

My parents are going to be in NOLA to be with the kids so thankfully I'll be able to be with Chad the whole time he is in the hospital.  Please pray that our time together in the hospital will be well spent, even as he recovers.  We will have more time than usual to pray together for the Church {who knows what Chad will be praying when he's on drugs!} and hope to be bold in opportunities to share the Gospel with doctors, nurses, and other patients!

They say that a full recovery for Chad will take somewhere around 6 weeks.  We are hoping that he will recover faster, but he's already had to agree to take it slow and that I get the final say as to when he can get back to work!  He definitely can't pick up anything for 6 weeks, which will be so tough with the kids.  They are used to a very engaged Daddy who loves nothing more than to pick them up or wrestle on the floor.  Please pray for Ava and Grayson as they have to adjust to a new normal during Chad's recovery. 

While you're at it, please pray for me!  Because Chad is such an engaged dad, I'll definitely be feeling his restrictions with things around the house and with the kiddos.  Please pray for strength from the Spirit, patience and gentleness with the kids, compassion for Chad, and a continued daily feasting on the Word. 

We have been so humbled and thankful for how our faith family at Edgewater has poured out love and service to us already . . .

Four men are ready to preach in Chad's absence.  

The staff and others have graciously taken on everything else that needs to be done this month.

  Edgewater is continuing to pay Chad this month even though he will be out . . . what an incredible blessing for us!  

Many families have already signed up to bring us dinner this month {you know I won't turn down food!}.  

A few guys will be cutting our grass each week until Chad is able again.  

Friends have already committed to having the kids over for playdates to give me some time and avoid us all going stir crazy!  

One friend gave us a sacrificial gift to cover my food expenses while we are at the hospital.  

My best friend is spending all day with me tomorrow during the surgery just to make sure I am supported {whether that means I need to cry, pray, laugh, play games, or take a walk}.  

Our entire faith family prayed over us on Sunday and I've gotten texts every day that people are praying.  

Seriously, the list could go on and on. And this is just for us . . . Chad's parents have experienced the same love from their family at FBC Lafayette!

We. Are. Blessed.

Thank you to everyone who is a part of what I listed above.  Thank you to friends and family who are covering us in prayer.  Thank you for being a picture of what God intended as He created the Church.  

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!