Thank Me for Your Problems

One of the many lessons we are learning, and of particular significance to me, is not to worry about things out of our control and to live in the present moment. Sometimes the present is quite scary but most other times it is enjoyable. Unfortunately I have spent too many enjoyable moments worried about the future and impending transplant. It is on our minds constantly.

Living in the present requires a greatful attitude and counting our MANY blessings. It also calls for patience. Our timing is not God's timing so I try to stay positive in the meantime. This is all easy to say, but not so easy to do. I have found comfort in the popular book by Sara Young, Jesus Calling, that revolves around this theme of thankfulness and living in the present. It is a daily devotional based on scripture meant to enrich one’s personal relationship with Christ.


I remember one day in particular that it brought me much needed comfort. It was the day I found out that Thatcher might begin to itch with this condition. I was devastated to think of him in this uncomfortable state. My mind began racing from one terrible thought to the next...Dear God, please don’t let my baby suffer. I wanted to be comforted, told it was going to be ok, so I opened this book and here is what I read:

THANK ME FOR YOUR PROBLEMS. As soon as your mind gets snagged on a difficulty, bring it to Me with thanksgiving. Then ask Me to show you My way to handle the situation. The very act of thanking Me releases your mind from its negative focus. As you turn your attention to Me, the problem fades in significance and loses its power to trip you up. Together we can deal with the situation, either facing it head-on or putting it aside for later consideration.

Most of the situations that entangle your mind are not today's concerns; you have borrowed them from tomorrow. In this case, I lift the problem out of today and deposit it in the future, where it is veiled from your eyes. In its place, I give you My Peace, which flows freely from My Presence.

~ Philippians 4:5; John 14:27

Peace is a gift that I pray for often. Thank God so much of this is out of our hands and in the Lord's hands. Even though, it is still hard to have Faith in God's plan. Through His Peace and our many blessings, I'm reminded daily of His control and loving presence. I think God speaks to us...between this and my fortune cookie, I'm a BELIEVER :).

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The World’s First Successful Living-Donor Liver Transplant

(This picture cracks me up! I hope BJ and I get to look back on something similar for our story one day)

The internet is such a double edged sword. While we can educate ourselves on any topic imaginable, we are also bombarded with uncensored information when ignorance can truly be bliss. As I have mentioned, I learned very quickly to only “google” successful liver transplant stories. In doing so, I ran across this story of Alyssa – the first successful living-donor transplant: http://www.uchicagokidshospital.org/specialties/transplant/patient-stories/alyssa-liver.html

I LOVE this story and it cheers me up every time I read it! I hope and pray we have a similar story one day. I would love to be able to share it and give hope to others. If you don’t get a chance to read it, it is the story of the first successful living-donor liver transplant that occurred in 1990. The mother donated a piece of her liver to her daughter Alyssa who had biliary atresia. Alyssa was around 1 year old at the time of her transplant. At the time this story was written in 09, Alyssa was in college. I love the attitude the family seemed to have about the whole thing and how normal it sounds like Alyssa’s life turned out to be.

Thank God you for the living-donor option. I pray Thatcher is healed and that our transplant is a success!

Clinic

We had clinic at Vandy today. It was a bleak reminder of how sick Thatcher is. He gained a little weight but not enough. He is starting to fall below his normal trend and will now need to add an additional bottle of milk with Pregestimil which leaves me only nursing him a couple times a day. During clinic, we go over medicines and how Thatcher has been doing to adjust accordingly. He had labs drawn which took 2 sticks today...terrible! I don't know if I'll ever get used to the bloodwork. In all, not a great clinic day.

Dr. Gillis has now spoken with Thatcher's surgeon in Pittsburgh, Dr. Mazariegos, and wants us to begin coming to clinic on a weekly basis. Thatcher's condition plays a role in scheduling the transplant so he will be monitored closesly. We're now waiting to hear from the surgeon next week and are anxious to get his take on a timeframe. We don't understand completely but don't want Thatcher to get worse. We are just ready to get this show on the road now that we've got a liver. I'll just keep it warm for him until then :).

Approved

RELIEF: That is the best way to describe how we feel about the news that I am approved to be a living-donor for Thatcher!! Pittsburgh reviewed my case yesterday and told me I was approved “without reservation”...just like the ole fortune cookie said, “A Perfect Match.”

The next step is to schedule the two surgical teams. My surgical team will contact Thatcher’s surgical team, headed by Dr. Mazariegos (http://www.chp.edu/CHP/Mazariegos%2C+George+V.%2C+MD+) and pretty much say, “We have a liver for Thatcher, when do you want it.”

Dr. Mazariegos

We will likely be contacted with some dates that work for the two surgical teams then choose when we can come up. Kind of strange to schedule such an event as though it were a C-section or tonsillectomy, but I’m sure this will be less hectic and less stressful than waiting for a cadaver.

I feel as though a weight has been lifted now that we have found Thatcher a liver, yet we are nervous and scared at the same time. We realize this is just one step along the way, but it is a small victory and gives us such hope. Today was definitely better news than the alternative. Praise God for the living donor option that allows me to give to my sweet Thatcher!

Still Waiting...

Pittsburgh did not call today. They also did not call to say we were bumped so maybe we will hear tomorrow.

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Flip Book

While we do not want Thatcher’s condition to define him or our family, it certainly impacts us all, including Amelia. Many people have asked how she is handling this, which is big concern for me as well. Currently, she does not have much of a clue that anything is “wrong.” She sees Thatcher take his medicine everyday, but when we are home and living our daily routine of work and sitter, Amelia is the typical big sister who will kiss Thatcher on the head one minute then take his toy the next :).

Amelia & Thatcher

No doubt, this is a part of her life as well and will mold her into the person she is meant to be just like the rest of us. (I think she or Thatcher will become doctors and help other sick kids one day :)). Since Thatcher’s first hospitalization in September, Amelia has had to deal with mommy or daddy being gone for a few nights. She’s been to visit Thatcher in the hospital a few times as well.

Amelia visiting Thatcher - Thanksgiving 2010

This quickly taught us that hospitals are not very good places for toddlers! While she matures a little more each day, she will likely be around 2 ½ years old when the transplant occurs. I have asked doctors and family and friends for their opinions on how best to handle, and how to help Amelia handle, our long stay in Pittsburgh. Amelia loves pictures, so one suggestion I liked was to make a picture book to remind Amelia how much we love her even when we’re not around or just remind her of home when she’s in Pittsburgh with us. Below are some pictures from the flip book I made her:
I hope to not have to be away from Amelia for very long periods of time, but it is impossible to care for a toddler in a hospital and really not fair to expect Amelia to behave in that setting. I also do not want to shuffle Amelia around between people she may not know very well on top of uprooting her. It scares me to think of her traveling such a long distance without me or BJ too. These are all things I pray will work out. We are so fortunate to have great help, especially from our parents. No doubt it will be difficult, but I hope to manage to make a home in Pittsburgh as best we can for a little while.

Link 4 Life

So many people are here for us, praying for us, and helping us through this difficult time – some we are aware of and others we are not. It is so touching and more than appreciated...it is truly needed. Thank you.

One such act of love and support has come from our dear friends who are organizing a "Link 4 Life" 5K Run and 1 Mile Walk and silent auction in honor of Thatcher. It will be held at Smiley Hollow in Ridgetop, TN on Saturday, April 23 at 8:00 a.m. Everyone is invited to participate in an effort to raise funds for Thatcher’s transplant related expenses including medications as well as food and living expenses for our extended stay in Pittsburgh. If you are interested, please visit http://www.link4life5k.moonfruit.com/. For all you Facebookers, there is also a page dedicated to the event: http://www.facebook.com/#!/event.php?eid=190268637659711.

The flyer for the event

We are so blessed to have such great friends who care enough about us to put such a great event together. It is no small task I’m sure. BJ and I are both touched by the response, and I know God is working through them. I feel as though I’m learning how to be there for others as our friends and family carry us through. I pray that God uses us for His glory and that I can return the kindness one day. Friends, family, and even complete strangers check on us, let us know they are praying, help care for Amelia, offer a shoulder to cry on, and have given donations. We do not take this for granted and want people to know that we not only appreciate it, but they can trust any donations will be used to help heal Thatcher.

Fundraising was mentioned by our doctor pretty quickly after Thatcher’s need for a transplant became evident. While we are blessed to have good insurance, many things are not fully covered including post-transplant medications. We were told by insurance that medicines post-transplant can cost in the range of $400-$800 monthly out of pocket, and he will take medicine for the rest of his life. Many expenses will also be incurred from our extended stay out of state including food and travel expenses. We do have an insurance benefit that helps with travel and lodging but does not cover food. Plus there are co-pays and out of pocket maximum’s each year. I will also have to quit working to care for Thatcher eventually. Not only is this a strain on us, but we lean heavily on our parents to help care for Amelia so we hope to be able to help them help us.

BJ and I also put some thought into how to accept donations for Thatcher. This issue proved to be more complicated than originally anticipated. For example, setting up a trust is quite complex with IRS regulations and the need for an attorney. A checking account in Thatcher’s name simply makes it more difficult for us to use the money as we see fit and could potentially harm his chances to be eligible for future assistance, as it would count as his income. We looked into several options, each with their own pros and cons, and decided on a separate checking account set up in our name to be used for Thatcher. While this is not tax deductible to the donor and may not have as many regulations to help in the transparency of the use of funds, this allows us the easiest and quickest access to money for everything from gas, to air fare, to food. Expenses will not have to be approved or reimbursed by an outside party.

We set up a “Link 4 Life” account at the Farmers Bank in Ridgetop with locations in Robertson and Sumner counties as well as a “Friends of Thatcher Link” fund at Bank of America. If you would like to donate, you may do so at any Farmers Bank or Bank of America location. Both accounts are in our names (Benjiman or Jessica Link).

"You are a perfect match"

...according to my fortune cookie from dinner tonight! Sorry, that was a little misleading. Actually, we still do not know whether I will be able to donate part of my liver to Thatcher. The living donor coordinator, Mimi, called this afternoon to say the surgeon was called into emergency surgery and was not able to review our case again this week. We are on the schedule again next Tuesday.

I was shaking as I answered the phone. I just knew she had an answer for me. We were really surprised to be bumped twice. We don't really know how to feel. It does mean we get to be home longer I guess since it postpones transplant, but if I'm not able to donate we will have to go through this again with another potential donor whom we have not identified yet. Thatcher is doing okay currently, I just hope this does not continue. Time is a factor as Thatcher is not getting better.

I hope my fortune cookie is right!

February 11th Clinic Visit

Friday was our first clinic visit at Vandy since our evaluation in Pittsburgh. We are still patients at here in addition to being patients at Pittsburgh Children’s, but Vanderbilt now defers to Pittsburgh on transplant related matters. Vandy’s role is to maintain Thatcher’s health, check his weight, keep his meds updated, and keep him healthy until transplant.


Thatcher had gained weight since our last visit (which is always a small victory for us) despite having less of his Pregestimil supplement in his milk while we were away in Pittsburgh and not wanting to eat much while teething. Dr. Gillis (the hepatologist) is always pleased with Thatcher’s weight and development and comments that she “just doesn’t know how he’s doing”...it’s a God thing! He’s still only about 15 ½ pounds (11th percentile in weight) and in the 28th percentile in height. I think they are just impressed he’s on the chart at all. Some of the patients in Thatcher’s condition look much worse with distended bellies and skinny limbs. He’s hanging in there and hopefully we won’t have to wait to see him get like this!


Nothing much to report from clinic. I updated them on our trip and commented that it would be a big day once we return home from Pittsburgh after transplant. Dr. G agreed, and while there is a “honeymoon” period, she reminded me that it is certainly not over at this point. It’s their job to prepare us for transplant and life afterward as best they can. This keeps us grounded.

Still Waiting

We still do not know whether I will be able to donate part of my liver to Thatcher. I waited by the phone pretty much all day Wednesday but heard nothing. I sent an email to my living donor coordinator and she said that due to the large number of transplant surgeries that day, the surgeons were not able to meet to discuss our case. They plan to meet this coming Tuesday, so we wait.

Normal

This is not normal. Since the day we came home after Thatcher’s first surgery with an overwhelming amount of medicine to give twice daily, medicine has become normal to poor Thatcher. I’ll never forget the look on BJ’s face as he sorted through the sack full of meds and syringes and list of directions. I sometimes worry Thatcher feels like he is being punished as I squirt syringe after syringe full of smelly medicine down his little gullet, but sadly this is really all he knows.

His meds have fluctuated post surgery but consist mostly of supplements since his body has a hard time absorbing the proper nutrition from his food. We are up to 9 meds now thanks to an additional round of something Pittsburgh prescribed to prevent Thatcher from getting chicken pox from BJ’s shingles to be given 4x/day. His meds consist of Vitamin K, Vitamin D, Vitamin E, Multi-Vitamin, Zinc, Actigal (a bile binder...whatever that means), antibiotic, medicine for itching, and now a round of chicken pox prevention. Poor guy! We HATE medicine and hope that this part will at least get better with fewer meds after transplant. (He can get down to 2 meds/day about 6 months post transplant). I worry so much about the long term affects of all of this. I know post-transplant medication has its own set of side effects I won’t go into, but I try to push these thoughts out of my mind because we really do not have a choice. Thatcher needs these medicines to survive.

It’s very hard to feel “normal” most of the time when all this medicine, the whole ordeal really, has consumed our life. It is increasingly more difficult to concentrate on anything else but the impending transplant. I do not want this disease to define our family or Thatcher so we work hard to continue to enjoy normal, boring things. Boring is nice for us.

Poor Thatcher also has to contend with normal baby things like teething. I knew it was coming, but look what I found Sunday... Thatcher was not acting like himself Saturday and kept me up most of the last few nights. He had a low grade fever, but unlike “normal” kids, a fever means a trip to the ER for us. We are supposed to call if it reaches 100.5. We skirted this temp and I am holding my breath hoping that it is teeth causing the problem, not an infection. I hate to see him uncomfortable but of all the meds we give, oddly enough, he is not supposed to have much Tylenol and NO ibuprofen. Tylenol is processed through the liver and ibuprofen in the kidneys. The kidneys need to be preserved for post-transplant meds that can be hard on them. Geez! To add to our worry, Thatcher cannot undergo surgery unless he is healthy so the closer we get to transplant the more important it is to keep him healthy.

I guess everything is relative. We feel normal, even somewhat healthy, in the hospital around other sick children, but I find it hard to be around normal children sometimes too. Even Amelia reminds me how easy it would be if Thatcher did not have this disease. I don’t mean to sound negative because we, unlike so many families with sick children, have HOPE for the future. Here is a verse a co-worker recently shared with me:

“Be Joyful in Hope, Patient in Affliction, and Faithful in Prayer.” Romans 12:12

Along with Thatcher’s healing, I have always prayed that Thatcher will not suffer. I also pray for our peace. There just doesn’t seem to be an end. A transplant is a lifelong commitment. I just hope it’s a happy life. I think it is important to stay positive, but it is very difficult. There are many complications and things that could go wrong with surgery and recovery. Not to mention they tell you that rejection is always a possibility. Today I pray for Thatcher to have a good quality and normal life, ours too.

Listed

Quick update: Pittsburgh Children's called Monday afternoon to let us know that Thatcher is now listed on the national waiting list for a cadaver liver. There are obviously more sick people in need of organs than there are organs for transplant, which is why there is a transplant waiting list. We are listed at the Pittsburgh facility. You are considered for available organs based on a combination of medical facts entered into a computerized matching program. These factors include blood and tissue type, medical urgency, body size, distace between teh donor and transplant hospital and time spent waiting for transplant.

It is much more complicated than this, with logarithms and written exceptions, that I don't completely understand. I just feel like the waiting list option just means Thatcher would get very sick before (and if) he got better. I guess we don't really feel that this is where Thather will get his liver since we've been told it is unlikely to get a B+ baby cadaver liver like he needs. However, technically we could get a call any minute and have to get to Pittsburgh in a matter of hours. We assume Thatcher will be a living donor candidate, and hopefully that will be me!! We hope to find out tomorrow if I'm eligible to donate.

So worth it!

Home Sweet Home

We made it back safely from Pittsburgh after a long week of doctor's appointments at Children's Hosptal of Pittsburgh. Man are we glad to be back and hug our sweet Amelia! We are all much healthier than when I last posted. BJ's shingles are healing and he is able to handle the children more and Amelia has not had a fever since Wednesday. Praise God!

We arrived home at 2am this morning actually. This trip was somewhat unscheduled...I had my CT scan Thursday with 2 different types of intravenous dyes (one to show the veins and arteries of my liver and one to show its size) and was told I would not be able to nurse Thatcher for 48 hours afterward. We had not packed enough milk for this and only had about 20 ounces to get us home so we hit the road. (Thatcher does have some formula he can have that we add to his milk which is more easily absorbed by his body but it smells like dog food so we weren't not planning on him taking a whole bottle of this without some breast milk to wash it down). It was a little bitter sweet traveling home because so much will have happened by the next time I make that journey from Pennsylvania back to Tennessee.

We did not find out much that was completely new information about Thatcher's condition, which speaks for our care at Vandy, except that the Pittsburgh team felt it would be a matter of weeks, not months, before Thatcher's transplant. They do not feel there would be any benefit to waiting for Thatcher's transplant, meaning he would likely not gain enough weight or grow enough to make much of a difference for surgery before he becomes more sick. He had two sets of labs drawn, one Tuesday and one Thursday, that reveal his worsening condition and rapid deterioration of his liver. This was much sooner than we had anticipated and expect his transplant may occur sometime in March. This of course all assumes I am the living donor, which we have not heard for sure yet. We are still digesting this information, but like most things in this situation, it is out of our hands so we feel this is somewhat good news...let's get this show on the road!

We spent the weekend prior to leaving preparing to go, but with a sick toddler and husband my hands were tied so my mother, dad, and BJ's mom came over to help us watch the kids while we finished packing. This was a nice little going away party and helped lift our spirits I think.

We left a sick Amelia on the couch,which was very hard for me to do, but my mom cared for her while we were gone. We left about 7:30 as the rain came down. One diaper blow out and feeding later we traveled up through Louisville, Cincinnatti, Columbus, then finally Pittsburgh by about 7:30PM.

We checked into the Ronald McDonald house that evening, glad for arriving safely and to be out of the car but overwhelmed by the significance of entering this place for the first time. I cried as we stepped into our room. It felt like a dorm room, cold and with a funny smell. I'm so glad we can stay there, as it is so convenient to the hospital with an indoor walkway connected to Children's, but I still can't believe we are one of those people who need a facility like this.

Living Room

Thatcher liked it :)

Pittsburgh Children's Hospital (from the car)

BJ and I both attended Thatcher's evaluation on Tuesday. This included social work, behavioral health, lab work, and radiology that included a chest x-ray and ultrasound of his liver. Nothing too uncomfortable, but we were exhausted after wrestling a baby all day without a good nap. The second day started with a teaching session that went over transplant, potential risks and complications, and life after the surgery. This information can be quite depressing to consider what if it doesn't work, but again, this is in God's hands and we are hopeful it will be successful. A successful transplant requires simple monitoring and daily meds (only a couple a day about 6 months after transplant). We toured the transplant floor where we'll be spending most of our time recovering before being discharged. Once discharged, we'll return regularly for check ups until clinic releases us home.

Thursday was a bit more hectic. Poor BJ had Thatcher the entire day while I spent my time at the adult hospital a cab ride away. Funny, as I was chatting with the cabby who gave me a ride over that morning he commented, "I think I have problems until I meet someone like you." I simply told him that we used to be the same way :). I was interviewed and scanned to make sure I was emotionally and physically able to donate. Again, we do not yet know the results of my tests but as I told the psychologist, you give your children a piece of your heart, what's little liver (I read this from another living donor story out of Chicago).

We are glad to be home if only temporary. Family and friends are making this possible. In fact, we received an overwhelming response from our first post. Thanks for the encouraging words and prayers. It is more than touching. I know God is carrying us through this. I would like to add if there is anything that would help make this story more complete, please feel free to ask. Unfortunately, we know way more about this stuff than any normal person should know, that doesn't get paid $250k :)!

We are enjoying this SuperBowl weekend pretending to be somewhat normal. We will wait to hear if I can give some of my liver to Thatcher. Hope to hear first of next week. We'll keep you posted!