Merry Christmas! Happy 3 months Seth!

Well, the eve of Christmas is just hours away, are you ready to celebrate the big day? We have taken it very easy this year and hold our blessings dear to our hearts. We are so aware that our family is the true gift and the giver of that gift is the Lord. Our hearts are forever changed after Seth's diagnosis, transplant and continued recovery. The small moments count. The hugs and kisses and cuddling, the playing and listening- even just listening to the playing, it counts! It's all taken on another tone. The rivers of our hearts run deeper than ever before, the pain felt deeper, the joy known deeper- we have been pushed to our very limits this year and wonder how we have made it and praise God that we have made it, that Seth has made it. I don't know if one could ever feel more vulnerable than when their child is battling for life. It really puts in perspective the truth of the matter. We can only do the best we can to love and care for them, the rest is in God's hands and we are safest and assured when we rest in Him for their lives. Peace is known there and nowhere else.

I often wonder what Seth's life will be like, how long will he live or not live. The transplant is only the first step after all. Seth's body needs to learn to accept that liver as his own and only time can accomplish this- and then, there is still no guarantee. Which reminds me, love him now and love him earnestly and leave the details. Do the best I can to make his life rich and fulfilled and let the rest be.

Seth is growing leaps and bounds. He is up on all fours rocking back and forth and scooting around quickly! He is very hard to contain, as you can imagine! He has zest for life and still smiles often, although not quite as generous! He is growing up after all and trying to read facial expressions and remember who people are. The nurse that came this week for lab draws got no love, none! He was inquisitive and serious, as we see more often these days, like he's trying to understand.

Today is Seth's 3 month anniversary post transplant. This is a true milestone and can mark a halfway point where we can say Yahoo! 3 months down, 3 months to go before giving a sigh of relief that the transplant was a true success. Initial rejection usually takes place in the first 3 months if it's going to happen, although the 6 month marker is a real trophy. By 9 months, we can be pretty sure the liver is settling in quite nicely and Seth is responding well to it. His meds have yet to decrease, although there are progress points just around the bend...

We expect and plan to have Seth's Broviac line taken out this January! This will be a major milestone as it feeds directly into his heart flow (sits just above anyway). Seth has never had a real bath that he knows of, not since 4 months old. All bathing has been creatively done with a tub next to him and washcloths. I can't wait to immerse him in water and see his reaction! I am thinking he's going to really enjoy it- he has such a fascination for the water when his big brothers are bathing! Having the Broviac removed will require Seth to have intravenous blood draws, so you trade one catch for another, but ultimately, it's a good thing. The line is a bear to maintain and requires a lot of TLC as you can imagine. Not to mention, he is getting older and a bit fascinated with it- it is not a sturdy catheter after all and is only held in by a small balloon and a stitch. Removal is good.

Around the 6 month mark, post-op, Seth will decrease a few meds. I will keep you up to date on that as it happens!

In the meantime, Seth continues to sit up very well! Crawling is around the corner and his new favorite food is winter squash... he is an amazing baby and we look forward to spending our first Christmas all together, as a whole family.


With love and warm wishes for a wonderful New Year.

Samantha & family

Thursday's Clinic Went Well!

Clinic on Thursday went pretty smoothly. Up at 5:30am to beat the traffic, we arrived at UCLA AT 7am and were only second in line. That was great! They had all paperwork in order and we were off to a day of seeing Dr.'s, coordinators and a social worker. Seth received three shots and was a super star about them.. strangely though he bled so much even the nurse was concerned. When I told her he was on aspirin therapy, she relaxed some, but was still taken aback and suggested I let the doctor know. I shared this with the Dr. later in the appointment and it was no surprise to her, she said the aspirin is doing it's job then.

Seth is gaining weight really well! With a steady diet of mama milk and organic baby food 1-2 times per day, he is getting chubby little thighs and squeezable, kissable cheeks! Oden and I talk about the foods we will eventually have Seth become acustom to that will build immune support and liver function. We want to give him every edge in health that we can.

In clinic we discussed Seth's Broviac line coming out in the beginning of the year! This is exciting news, bittersweet, but exciting. Seth will need to fast and be sedated to get the line out, so this always causes me concern, but the idea of living without caring for that line is an absolutely wonderful thought! It has such high risks for infection and is fragile to an active baby. Which by the way, we spent last Tuesday in the ER at UCLA for Seth's first line break- this referring to his Broviac of course. I was changing him and getting him ready for bed and noticed a small crack! I wasn't even phased, this is amazing in itself. I guess at some point you start taking things in stride and they become par for the course. We immediately called UCLA and paged the on-call pediatric GI Fellow, how do you like that for a title?! She confirmed with the GI doctor that Seth did have to come in and have the line repaired as it is too risky for infection. The timeline is usually to catch it within 4 hours of the break to minimize infection in the line- and we had no idea when it cracked. So, needless to to say, we found a sitter for the other two boys (thanks you big brother!) got to LA in record time, sat in the ER for 2 hours before getting an ER room and returned home by 2am. Yes, a 4.5 hour ordeal. We still had clinic the very next day which was good as a fever of infection would have presented itself by then. So it was a comfort to be in the company of Seth's best advocates. What an adventure.

So, progress in Seth's world? Yes! Seth is able to sit for minutes at a time. He is scooting around and making his way around the living room. We were so concerned with his little fingers getting off the blanket we lay on the floor for him, but it hasn't seemed to be as big of an issue as we anticipated. Seth seems hearty and strong. He hasn't been sick and remains healthy and vibrant. He's gaining weight as I mentioned before and he takes his medications like a champ. He still enjoys his big brothers like nothing else and looks for them at every turn. Max and Jack each have their own special relationship with Seth and are super sweet and tender with him. Nothing makes him smile and laugh harder than a game of peek-a-boo or a gentle tickle from his big brothers!

Prayer Requests:

That Seth remains free of a line infection.
Max (6) had a mild fever last night, please pray for the household to be free of germs and any further sickness.
Max's bday party is coming- please pray for health among children!

Thank you beloved friends,


Sam

Happy Sunday!

Good morning friends! It's a fresh, crisp December morning for Southern California. It's beginning to feel a lot like Christmas! We have yet to decorate and get a tree, but it seems a bit more festive in the air. Shopping has been somewhat of a hardship as you can imagine in that getting is out is quite limited, but we know that the season is truly about the birth of the Savior anyway. We make sure to always keep this in the forefront of our minds and hearts when it comes to Christmas time. We also know that presents spark the day with joy and happiness too, so looking forward to a little shopping before the big day arrives!

Seth's health is surprisingly so good! We were just talking this morning about how we are amazed at his strength and ability to resist sickness. He has only had that one encounter of a small cold about a month ago, and nothing since. It goes to show that being proactive in simple hand washing and a lot of prayer goes a long way! Seth has a busy week of shots coming up. I'm already anticipating the 4 injections he'll receive and lamenting for the tears to come. He has boosters for his flu shots, both H1N1 as well as the seasonal, and Synagis, which is a two part injection that Seth will get each month during the cold and flu season, to protect against a lung infection called RSV.

Seth's first bottom tooth is officially in. I noticed it was yellow, so called our transplant coordinator to see if this was common due to the medication or something of that nature. The doctor relayed back that it is due to his bilirubin level having been high for so long. Of course I am disappointed, but all things being put in perspective, this is the least of our worries. It is no reflection on his health at this point in time and that is what matters.. there is another bottom tooth coming soon, so we will be able to see if it affects all the teeth or some here and there.

So, a busy week ahead of us here. Please pray for Seth to remain healthy during all his doctor appointments coming up and please have a blessed week, enjoying the holiday season!

Good morning! As we depart from the Thanksgiving holiday, we are reminded of all the joys we have to count this year. We have a beautiful baby who has survived a life threatening disease, we have two other wonderful sons who express their love so generously, we have a marriage of friendship and depth and we have Christ Jesus who has "saved our lives from the grave and loaded us with love and mercy."

Our days are full of rambunctious running and laughter with the two older boys playing together with great imagination. They have developed such a wonderful compatibility, it's so much fun to watch! Both boys indulge Seth with giggle inducing attention and silliness. Seth is so taken by the boys, he seems at a loss when they're not around. Max will return back to school this next week and we will miss him terribly!

Seth's health is consistently well. We haven't had any rejection issue thus far, in fact, last week his Prograf level (anti rejection med) was above normal range which would indicate a decrease may be necessary once again. That's a good thing if it happens, as it would signify that his liver is performing well! We will keep you updated on the prognosis as the blood work results aren't in yet due to the holiday weekend. Seth is up on all fours rocking back and forth and exercising those muscles. Once again, he has no interest in sitting and can't at this point, but may crawl within the next few weeks. We are trying to figure out how to let an immune compromised baby scale the floors!? His pack n' play has become so confining and will only become smaller as he grows!

We don't visit the clinic again until December 10th, so we have had and will continue to have a nice reprieve. It has been very nice to wake up on Thursdays and know I don't have to battle traffic in the wee hours of the morning. We are thankful this week and every week for the blessings that we have... Thank you for sharing them with us.


With love,

Sam

Happy 8 Months Old Seth!

We Are Thankful For...

Happy Sunday to You!

Well, another Sunday of missing church here. We have been trying to decide about sending the other two boys along with a friend, but the logistics just seem a bit hard to make it happen. I know Max is missing church and asks when he can go back. I am glad to know he misses it! Jack on the other hand would rather stay with mommy anyway, so he says he doesn't want to go. Ask me and I'd say yes in a heartbeat. So much of our lives when we become Christians has to do with the church body- the body of Christ. A true family is formed and runs deeper in some ways than the family you may have been born into. Not because of choosing one over the other, but rather the depth of spiritual things becomes the forefront of ones life and all else becomes secondary. If we can minister to our families and talk on the things of God, then we have a two-fer (is that a word?)!

It's a busy house here at the Fong's! Seth seems to need my every attention and as I try to wean him a bit into his own independence, he is beginning to cling a bit more. I know this is the standard for 8 month old babies (2 days shy, can you believe it?) but we do have more of a tendency to treat Seth more gingerly as you can imagine. There are so many moments where I make a conscious effort to touch, talk and focus on the other two boys just so they don't feel left out or sidelined. I think as a parent with more than one child you are always a bit stretched for time allowances for each child, but especially in our case it seems. Maybe with any family with special circumstances, I don't know.

So Seth's clinic went very well! We will wait for his blood work to reveal all his numbers, for last week, but based on what information that had for the previous week, Seth is thriving and doing very well. His liver numbers are in range along with his medication levels. They gave us a three week break before going back! It's a bit unnerving I have to say. We will still have a home health nurse come in maybe once per week and do a blood panel to check for appropriate ranges, but other than that, our job is to administer medication, help Seth try to sit up and keep him germ free. Our family actually went ahead and got the H1N1 vaccination last week. We were able to find it Thimerisol/Mercury free which was important to us, so I thank God for being able to get one in that form. Max had outbreaks at his school and even in his class of 12 children. It was too close for comfort, so we felt the necessity to act and act fast. We had turned down a dose for Seth about 3 or 4 weeks ago because it wasn't Mercury free, but then got very nervous if we made the right choice. We are not advocates for vaccines, but we personally do have the children immunized in small batches.

I have included a photo to show you our weekend regiment for medications in the morning. I thought you might find it interesting. We are now off to get the IV medication hooked up for the next 1 1/2 hours. We try to time it along with Seth's morning nap to take a chunk out of the time.

With love my friends, we'll check in in the next few days!

Love,
Sam and family

Monday, November 16th, 2009

Weekends are never quite easy. It's wonderful that Jack has his big brother home to play with. They are playing so compatibly these days, it's such a joy! Seth on the other hand has harder weekends. His medication schedule is a bit different as he receives four large doses of Bactrim, an antibiotic, over Saturday and Sunday. He is such a jewel, not very fussy, but his body just goes into overload and gives him tummy trouble with excessive spitting up and lots of horrific diaper changes which leads to diaper rash. It obviously affects him internally. There is also a mysterious outbreak of hives here and there which we need to address. Not fun...

On another note, there is one glimmer of a tooth peeking out of Seth's lower gums! This explains the massive drooling and a bit more of his crankiness the past few days. Bibs, bibs, bibs! All in all though, he is such a sweetie! So ready to play and be entertained. He loves his brothers, I know I've shared so many times, but they give Seth such happiness and energy. Boy is Seth energetic! He loves to bounce in his jumperoo- I have to limit his time in there as he's more than content to just jump and jump. Can this be good for his head? Sometimes I wonder...

When Oden and I look at Seth we both marvel at his recovery and continued recovery. We see a miracle, God's miracle. Of course, it causes us to look to God for what He has in store for Seth. It makes sense that with hardship, comes an amazing story of grace and hope. It reminds me of Romans 8:28:

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

When we can purpose all things for Christ and trust them to Him, we have really arrived at a place of peace. We have entered into the resting place where all things, large and small are put into perfect perspective. Lord, I pray I can be here today...

It is daily. It's a daily giving over and sometimes tears, but required to get the full blessing that will be intended through this tragic course of events. So many have suffered such worse things, I find myself interested in others sufferings or situations because it makes me feel that we're not alone, as well as puts our own situation in perspective relationally.

Thank you for your continued prayer, for your comments and feedback. We do love hearing from you and read each response and hold them dear to our hearts. We are tucked away over here in our little house, attempting to avoid the rampant flu and colds going around out there. It's especially critically for Seth as his immune system is so suppressed as you know. Looking forward to going to church, enjoying grocery shopping and being around the community again...I miss it.


With much love and warm hugs,


Sam

A clinic free week!

Well, we had a clinic free week! It was a bit strange not to go and check in and have Seth evaluated. Instead the home nurse came out on Wednesday and did his lab draw to check his Prograf level (anti rejection med) and his electrolytes, and liver function. We haven't heard back yet, but typically the response is "Seth's numbers look fantastic." Our wonderful transplant coordinator is taking a nice little vacation in New York this week, so we will miss hearing from him how well Seth is doing. We have really grown to love him and his care for Seth in these past months. He does a lot of footwork of ordering medications, coordinating nursing and over-all relaying important information having to do with Seth's health. You can imagine how much he means to us!

Seth is growing up so fast. He actually reaches out for all of our faces in a sweet, caressing way. He loves to bury his face when he's happy and giggly and is so fascinated by his big brothers. Max and Jack are so sweet and interested in their little brother and spend a lot of time entertaining him and getting him to belly laugh- we are enjoying our family tremendously. Admittedly, we do have the looming presence of the reality of the situation that just sort of exists over there in the wings, but we try to remain mindful and thankful for how far we've already come. How far Seth has come...

Nov. 5, 2009 Thursday Clinic

Great clinic! Seth is doing well and won't need to return for two weeks! This is great progress. We discussed the fact that Seth has limited upper body strength. He will need to have more play time on a very clean floor (haha) so he can practice lifting and control. His leg strength is amazing of course! He just want s to stand, stand, stand! The Dr. said a lot of liver transplant kids go from tummy to walking and don't even bother crawling. I am still stumped how one can build strength inmuscles that aren't sewn together?! But, it is possible, they reassure me each time!

Sickness is gone from our home praise God! Seth does have a very slight cough, but hardly at all and it never moved to his lungs which is great. We actually sent Max back to school after 2 weeks of home schooling. We wanted to protect him from the swine flu that was too close for comfort. Lo and behold, he contracted the regular flu anyhow. I am SO glad that is over. It was really insane. I am already overly conscious of germs, I do not need anymore reason to go crazy! We are always trying to keep a sense of normalcy for the other two boys, of course. We are just intently cleaning as we go and adding it to our routine now. What a great daddy and husband, he is so on top of chores and so diligent. I have always teased how I have to race him to get to the dishes of the laundry. He seems to beat me there more often than not these days. I am so thankful for such a wonderful partner and companion- he is a true blessing and oh so lovable...

So, a sense of normalcy is in the air. It is not fully realized, but it's looming there in the close distance. I have moments where I realize this is doable, things are okay and we will gain strength, month by month. Right now, Seth and I (hehe) are missing Godly fellowship terribly. We have had a couple "front yard" visits from friends and there was so much rich satisfaction that came from it. Looking forward to getting back to church- finding our "new normal" and pressing on with intent and faith.

Thank you for being with us friends. I'm off to pick up a bouncing baby and cook up some dinner for the Fong guys. Oh the simple joys of being with your family.


With love,

Sam

Sunday, November 1st, 2009

It feels like so long since I last wrote! We had another clinic visit Thursday with mostly positive feedback. Seth will need to receive another type of medication given weekly (by way of a shot) to increase his white blood cell count. It seems with the immunosuppression, this is just another side affect that they need to manage and care for. They have also decided to increase his oral magnesium to 4x per day rather than 3 as his level is really low. Seems the Prograf (anti-rejection med) causes the body to rid itself of magnesium as well in some patients.

Seth’s incision has healed nicely. I can’t help but think of how he will eventually be re-opened to be closed with fiinality. They have said a couple different dates, depends who you talk to, but the general idea is before two years old. I can’t even imagine that, even though it is much less invasive than what Seth had already encountered. It’s so nice to see his clean tummy! When he laughs and cries it definitely protrudes which takes some getting used to, but they assure us, it’s completely safe and able to be lived with. They expect delays for the time he was down in recovery, but not in reaching milestones that are reasonable and age appropriate. Seth is already rolling over again and moving those feet like he has somewhere to go!

We have been battling sickness here in the Fong household. The two boys contracted the flu right after Seth returned home! We took Jack to the pediatrician to test for swine flu as he had a fever for days, but it came out negative. This flu lasted long and hard. We separated the house to some degree, gating off one of the rooms so Seth had a safe, clean area to be in. We ran the air purifier and sanitized remotes, doorknobs, light switches and every other possible thing time and time again throughout the day. It was a feat, let me tell you! In the end though, Seth came down with a pretty nasty cough that we are watching carefully. It’s a pretty dry cough, which is good since pneumonia is one of Seth biggest contenders right now in his immunosuppressive state.

Please be in prayer for this specifically if you would. We are so aware that we are completely out of control of this thing. We must be faithful to believe God for Seth, whatever the end result be of his health. Not for the specifics or detailed ideas of what we want the Lord to do, but for Seth’s overall health and gift of life. There is no other place to rest. We have no guarantees here and that is where we have to believe the Lord for every outcome.

I will sign off on this entry as it seems I can’t get to the computer fast enough! But hope to write to you again with a couple days! Maybe we’ll have daddy do an entry or two!

Agape friends and loved ones,

Sam

Many thanks...

For all of you who have spent your time in prayer, in the kitchen and finding little treasures to make our hearts happy, a very warm and sweet THANK YOU to you today. We weren't able to keep proper track of all the wonderful gifts bestowed upon us or our family, but please know we are appreciative and thankful.. we take heart in our Heavenly Father knowing!!

We have been showered with your love and thank you for it...


Xoxoxo,

The Fong Family!

Stitches Removed! Healing Well...

Hi friends,

Today was a big day. It was Seth's first official clinic visit post transplant as well as getting his stitches removed. It truly made for a very looong morning. Traffic to L.A. is so bad! Oden and I avoid traffic at all costs and have been spoiled by a flexible schedule most the time. It's never been an issue. So, on the road at 7 am with all meds in tow including the morning IV dose that Seth requires. It takes such planning to negotiate handling Seth's central line, flushing it, heparanizing it and administering meds. The goal is to minimize accessing the line as much as possible to prevent possibility of infection as the line sits just above his heart valve. So, morning blood draw, height, weight and the inevitable, stitch removal. It must have been the longest 25 minutes of my life. Seth was screaming and in obvious pain, the stitches had settled deep and were grown over a bit in places. There was no way to truly medicate him beyond Tylenol unless we wanted to put him under anesthesia and go the whole fasting route. In hind site that may have been a better idea. What I want to relay though is that Seth took a little nap after the ordeal (as you can imagine) and woke up smiling. WOW! He amazes me and I am continually glad he is so young and won't remember these horrible instances... But, yes, he was smiling with joy.

Beyond that, he was given a wonderful bill of health. So far, so good. The Dr. shared some insight and perspective. It's not so easy to have that sometimes in this situation. She assured me that it was okay to have Seth share time with his brothers. Not to alienate him and make him off limits, but to practice good hand washing and draw the line at slobbery kisses. How about that? I may have a tendency to go overboard out of preservation of Seth's health, and she was able to help me put it in a bit of perspective. It was very helpful and much needed.

We have had Max, our 5 year old out of school this week. There is too much swine flu floating around to take chances. Once we feel assured that the places he goes are on flu alert, we will rest a bit more confident. Until then, the boys are safe at home and we are enjoying one another's company and practicing a bit of home schooling. Everyone in our home is being asked by the liver Dr.'s to get flu shots, both the Influenza as well as H1N1. If you know me, you know I am not a huge fan of vaccinations. I have struggled with this since Max's conception in 2002. There are so many pros and con to vaccinations, for which I feel I have educated myself on both, but I can never seem to rest with it. No input necessary, really, just stating the facts {{wink}}.

We have received many warm, delicious meals that have nourished our little souls over here. For those of you who have blessed us in this way, many, many thanks. We have enjoyed a dishless sink and full, happy bellies. For those of you that knew Doug Potter, let's rejoice with one another for such a precious life that sparked so many warm feelings in everyone he touched. May we see him again soon! Maranatha!

So, Seth is well! His liver function is beautiful. His demeanor, great and best of all, our family is back together. Please pray for the pieces that broke a bit along the way (in the other 2 boys especially). We are trying to recover lost time and soothe insecurity in them. God is good, and we will ultimately trust Him for these two, but we also pray for much needed wisdom.


Agape friends and family...

Sam

Seth Begins First Foods!

Seth began first foods today! I offered him rice cereal and he had absolutely no interest, so i went straight for a fruit. His interest was limited at first, but later in the evening, he was more than interested and cried when I pulled the spoon away! He is gaining hunger and strength and is almost normal looking from the outside! It's amazing.

We have our first "clinic" appointment this coming Thursday. We will go and see all his doctors as well as coordinators, have blood tests drawn and track his progress. It's funny how I am looking forward to it, looking for some concrete evidence that Seth is doing well with his magnesium levels and that his liver levels are sparkling and shiny! He has fared VERY well thus far with excellent numbers, so we will expect to see the same or better. We have great hope for his recovery and day to day life. He is a jewel at home and very happy to see his brothers! He stares and even belly laughs at their dances and wiggles. They have begun to take an interest in him, putting on shows and engaging him! Seth is very happy about this. We have set into motion the rule of toe touching only. It's a bit sad because the boys were always so hands on with Seth, but it's worth the effort to preserve his health and safety. A fever equals a hospital stay, period. no stops. We want to be diligent with Seth's health and are prayerful for wisdom on the happy medium of what this means...

Being home has been very busy and requires a healthy respect for attention to details. There are meds to administer, an IV to maintain, sponge bathing to take place and two other boys who I want to shower with love too. We are a busy family once again and I love it. It's the small things you miss when you're gone...

Finally Home!

Sam is tied up taking care of Seth's medications so I (Seth's daddy) will attempt to share what has transpired since her last post.

Last episode, on Wednesday, October 14th, Seth and Sam were waiting to be released from the hospital PICU (intensive care unit). They needed to wean Seth off of his pain medication and balance his magnesium levels. On Wednesday night Seth and Sam were finally moved to a private hospital room complete with restroom and shower. The intensive care units had neither of these comforts. They had a "better" nights rest without the buzzing and beeps of the monitors going off and were released the following day.

I drove up immediately with our other two boys in tow. We got to the hospital, met Seth and Sam outside to load the luggage. Then Sam and our three sons went to the hospital pharmacy while I waited in the van in a 15 minute max parking slot.

About 15 minutes later, a security guard approached my vehicle and I was thinking, "He's going to make me move." Instead, he asked, "Are you Fong?" And I answered, "Yes" puzzled by how he knew my name. He said, "Your baby got his hand stuck in the elevator door and is now in the kiosk in the emergency room."

I was parked outside of the emergency room and rushed inside to a small room within the ER to find my five year old, Max crying, Sam trying to comfort both him and Jack ( 3 year old) with Seth awake in the stroller. We were concerned about Seth being where people come when they are sick, as he has little immune system working because of the anti-organ rejection medication.

It turns out the Max had somehow put his hand into the crack of the elevator sleeve (the area where the door slides into when opened) and when the door opened, his hand became wedged between the door and the sleeve. It took bystanders a while to get his hand freed and then they rushed over to the ER to tend to the injury. Four hours later, after registration, nurses, doctors, X-rays, reading X-rays, ice packs, we were informed that there seemed to be no breaks nor major tissue injury.
We finally left the hospital and braved the dense 405 freeway traffic to our home in Huntington Beach.

Now, Sam is the nurse, administering Seth's seven oral medications and using a med-pump to slowly (over an hour's time) inject antibiotics into Seth's sole existing IV. Seth remains on methadone and will have to be weaned off of it over a short period. It's his sole pain buffer after being weaned from the narcotic Dilaudid.

The next three months will be crucial in his recovery. It will take about a year to recover completely. He will continue to take the anti-rejection meds for the rest of his life. He will need blood work done to monitor his chemistry to assure that there is no rejection. And last but not least, we will need to return soon to close up Seth's abdominal muscle wall which could not be done after the transplant because the donor liver was too large for his little body.

So, we've come a long way since discovering Seth's illness. It has been a surreal experience, one that one never expects nor thinks will happen to them. Our lives are changed forever, or at least in this short lifetime.

We have grown deeper in our spiritual walk with the Lord, having had to trust God with each unknown step. In our lives, everything has been shaken and put under tremendous heat and pressure. But this is how diamonds are formed; under heat and pressure. We know that God has a plan for Seth's life, otherwise he would not be alive. We are excited about what God will do with Seth, as he becomes a godly man.

October 14th, 2009

Hi friends,

Thank you for remaining faithful and checking back in with us. I have been trying to get to the computer for a few days now, with limited time. Seth is awake, active and has his sweet demeanor back. We have had some set backs in that Seth did not withdrawal from his pain medications well and ended up on Methadone. The dosage is small and the time he is expected to be on it is only for a few weeks as he weans down slowly. I believe the weaning will be less aggressive than with the Dilaudid. Seth would be in screaming fits and a bit scared, so they thought the withdrawal was more serious than not. So we press on...

We are looking forward to going home in the next day or two! There will be a lot to manage as far as Seth's care goes, but after all we've been through, it will be more than fine. It will be so nice to have the family back together again, finally.

Many have asked how the muscle will be closed and when. The surgery is actually elective which I find crazy! It's a man made hernia that Seth will have until the final closing of the fascia muscle. It shouldn't interfere much with his progressing, rolling over, etc. But I move forward with trepidation...

I have to run to a very active little guy with tons of energy. He needs a lot of stimulation these days!

Thank you once again for your prayers and hearts...


With love,

Sam

October 9th, 2009 ::No Tube!::

Sorry for such a long break between writings...

Seth is doing well and everyone is marveling at his progress! Amen to the Lord! May He be glorified through this. Seth had his feeding tube removed today- victory! This was the means by which he would receive milk and oral medications. He has had such success with feedings that they are allowing me to nurse him again! Of course, daddy bottle feeds him when he is here the other portion of the week.

Seth's meds are being swiftly decreased so they will give him Adavan, an anti-anxiety narcotic to counteract the Dilaudid. He should be weaned from the Dilaudid by Sunday and the Adavan shortly after. We expect great success with this and covet your prayers. He is healing very well and they say his liver numbers are more than excellent. So far, so good! We will enjoy these milestones- as the future may hold variables we cannot really be prepared for. We are hoping to the Lord in our hearts, that Seth will be one of those miracles where the surgery is a success and that's it. The nurses say that is pretty rare, but we will hold out for it.

Word is that Seth may return home as early as next Wednesday if everything goes well! Can you believe it? We will have to keep germs and viruses at bay and will need to educate ourselves on how best to do that. We do know that church, stores and enclosed public places are out of the question for awhile- especially during the cold and flu season. Boy do I miss church and the fellowship of the Saints. There is so much power in the praises of His people and the teaching of the Word. God will sustain us as He has continued to do these past months. It was only August 7th that all of this began...

Thank you for standing with us, checking in and praying.

We love your hearts,

Sam

Oh Joy! Look at our boy!!! Day 12 Post Op

Look at this smiley baby! I am home with the boys, but Oden is keeping me up to date with pictures and reports of good things. Seth is amazingly alert and happy these past 2 days. I was able to be there yesterday and switch off with Oden later last night, so we both get to enjoy Seth's renewed energy. Boy, is it fun to play with him and enjoy his sweet company...

They began giving Seth "mommies" milk yesterday, very cautiously, and then increased it a bit today. They are expecting him to do well with digesting, so time will tell with this as they measure his belly daily and look for signs of normalcy.

Can you believe it! Yes, believe it, God is good, right? What a blessing...

Please be in prayer for Seth's weaning off pain medication. They had suggested yesterday that if he can't tolerate weaning off the Dilaudid, he may have to go on Methadone. He's on a very small dose, and they continue to lower it daily. For what period of time, I'm not sure, but please pray along with us that this will be a non issue. His incision has only been closed up for 6 days, but they are swift to move him along.

So, we will update very soon with Seth's progress. Please forgive the cell phone pictures, but we have found this is a simple way to get photos up while still at the hospital! Look at the progression of his tubes being removed!


With Love,

Sam

October 4th, 2009 ::A long night, with smiles to follow::

Well, it was long night here... Seth was so uncomfortable and unhappy. He was treated with three medications to try to calm him down and settle him. Finally at about 4am, he slept and had a nice long rest until the sun came up. Our surgical team stopped by this morning, as they usually do, and suggested it may have been the high level of anti rejection drug, Prograf, that he received yesterday. Seth will remain on Prograf indefinitely to curb his body from rejecting the donor liver, which is doing absolutely great by the way! The dosage levels change daily, so there is always tweaking to do.

It's amazing to me that Seth can even recover and heal with a foreign organ in him like that! The surgeon came back with news that Seth's liver was indeed diseased with Biliary Atresia and he also shared that Seth was about two weeks away from losing his life. His liver was in a severe diseased state and hardly functional... Praise God we got the liver we did in the timing we did. We will forever be thankful to the family that decided to donate the organs to save other children who had a fighting chance. I know another family received the kidneys and am sure that means that another family received a heart. Organ and tissue donation is something I hope everyone will look into as a forethought rather than an afterthought left to family members. It's an amazing, much needed gift you can offer. Tragedies occur, but if a blessing can come from it, all the better.

The ICU doctors just came around and announced that Seth will begin trying to accept milk today! What progress! I tread with hesitation as aspiration is a concern and being able to digest, pass, etc. It is the trial of his new organ and the new pathway they have created in his digestive tract. But I am excited, yes, yes, I am excited... Our boy is on the mend (I got goosebumps saying that).

Thank you all for your love and care. For your messages, gifts and support. We are amazed at the wonderful network that has come together for us during this horrible trial. We look forward to reporting good news in the next few days of additional milestones for our little guy!

Here is a picture from this morning... seth was awake for three hours! The most he's been awake in almost 2 weeks. Enjoy his beautiful face.

Love,

Sam

October 3rd, 2009 ::Breathing tube gone!!::

Hello friends,

Seth had a fairly good night. They happen to cut his breathing exercises down last night because he had a 15 second apneatic episode. It could be due to atrophy of the lung muscles, but there is no telling. They went ahead decided to ex-tube him anyhow so he can move on with his recovery. So far, so good! I was able to hold him within 15 minutes of the tube removal!

I have to say, he is pretty uncomfortable. I'm not sure when the discomfort is actually coming from, but we are keeping an eye on it and trying to soothe him.

Here is a picture of Seth without his tube and me getting to hold him for the first time in 10 days!!!

Ugh!!!!! No Extubation Today... too "Wet"

It seems Seth is too "wet" to get the breathing tube out today. It would impose a risk of not being able to move out the fluid in his gut and having to re-intubate him. I admit, I am ridiculously disappointed. When Seth's tube comes out, he can be held and heard and better understood to some degree.

We will have to wait until tomorrow and see where he is at then...


Thank you for your prayers,

Sam

October 2nd, 2009 ::Before Extubation::

This picture of Seth sleeping is before the extubation this morning...

October 1, 2009

My strength is made perfect in weakness...

Isn’t it funny how we become so aware of the presence of God in our weakest moments... Wouldn’t it be wonderful to call out to Him in such earnestness at every moment when we seek Him? To truly understand what it means to rely on Him for all things big and small? He is there. He is waiting. May our hearts be fervent in our daily walks and talks with God. It reminds me of Paul in the book of 2nd Corinthians:

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.
2nd Corinthians 12:9-10


Seth is gaining strength each day. I haven’t seen him in 4 days, so it was nice to arrive to a beautiful baby with a glimmer of normalcy in his eyes. He is induced into sleep most of the time by pain management meds, but when he’s awake, he is mellow, mostly content and resolved to the condition he’s in right now. The little guy kicks those feet though! He is squirming here and there too. It’s nice to see daddy just take charge and move Seth around to find comfort. He is so brave and just takes initiative... I always thought of myself as a strong, capable person, definitely confident in addressing the needs of my children, but this is a much different situation. I find myself trading lightly, a bit insecure. When Seth winces, I lose my footing and become unsure of how to help him. The fact is, he is uncomfortable sometimes, he doesn’t like to be suctioned (his airway) or messed with too much. It’s part of the healing process nonetheless. Oden helped me realize it’s necessary. This inhibits bacterial growth and helps Seth to heal. It seems I am trading these days... I trade his discomfort for his inevitable strength. The amazing thing when I look at him is... the liver is WORKING. Amazing. Truly, truly amazing. Can you imagine?

We expect that Seth will have his breathing tube removed tomorrow. Oden and I both wanted to be here for the event, but one of us needs to be home with the other two boys. It is a milestone- it signifies a rest from surgery, a confidence that his health is on the mend and he’s progressing. There is slight concern regarding his diaphragm, but please pray this is resolved on his own and he can move forward. They would not take the tube out if they didn’t have high hopes for his ability to maintain properly, but will re-tube him immediately if necessary. Looking forward to a baby who can make a sound! We haven’t heard anything from Seth since September 22nd, the night before his surgery.

So, all in all, we are on an upswing of positivity! I will check back in very soon and update you with Seth’s progress. Many thanks for your thoughts and prayers and commitment to follow this through with us. Your hearts are beautiful...


With love,

Sam

Tuesday, September 29, 2009

I won't post much today, too emotional...

Here is Oden's last Facebook entry from 9am this morning...

Things took a turn for the worse last night. Seth is going into surgery this morning to correct his internal bleeding. This will postpone closing Seth's incision for about a week. Please pray for a successful surgery and for Seth's overall health. God is still in control of it all and we continue to trust Him for Seth's life through his sufferings. Agape overflowing to all of you, OdenSamMaxJackSeth

3pm
Seth just returned from the operating room. There were no major "leaks" as in arteries and veins. They have closed the incision but were unable to close the muscle tissues, therefore, he is sealed, but will have to go back to have his muscle sewn back together. The surgeon said the liver looks good... so we're on our way. Thanks again for the prayers. We are more than thankful for you!

With love,

Sam

Post Op Picture...Day 2

A bit graphic for the faint of heart, but this is a good picture of Seth awake and comfortable. It seems managing his comfort is a fine line. He needs to be awake enough to keep his muscles strong and his ability to function in tact, but he also needs to be as far away from his pain as we can get him. He's doing alright and is fighting well.

Prayer requests:

Seth's kidney's are compromised from the surgery, he has been having a bit of trouble getting them to function and produce. Think mechanics...

Seth's heart rate is fluctuating like crazy due to some proteins they are adding intravenously and therefore his blood pressure drops, or vise versa. Today his heart rate dropped into the 50's and there were doctors hovering over him trying to address the concern. They can only hypothesize that it has to do with the Albumin (protein) increase. Blood pressure and heart rate try to compensate for one another.

Please also pray for Seth's "fluid overload," called hypovolemia. A lot hinges on his ability to get the fluid released from the body so they can close his incision. The ideal is to go back into the OR on either Monday or Tuesday, depending on how he responds to the diuretics being introduced today.

So, we thank you once again for your love and support and look forward to your sweet faces very soon.

With warm hugs and a lot of love,

Sam

September 25th, 2009 Post Transplant

Hello friends,

Seth is 2+ days post transplant and doing very well. He has not encountered any unforeseen complications thus far and we all hope for the very best in the next few days. The liver he received is functioning as his own and his skin and eyes have already begun to change! If you never met Seth, you missed his more than sun kissed glow and the whites of his eyes were more a shade of chartreuse... yes, green. When he looked at me today I was so excited I said, "they're white, his eyes are white!" It's a wonderful sign my faithful friends...

As I mentioned in my previous post, Seth will need to go back into surgery next week to close his incision. A bit graphic, but true. Please pray that he will tolerate the procedure(s) needed to move forward in his recovery. So far, so good.

I want to share with you a bit about the night before Seth's "offer" came through. They use the word offer, because that's what it is. They present you with what they believe to be a good organ, or as close to good as they can get and you either take a chance and wait for a perfect match, or accept the "offer" as presented with all the pros and cons. We accepted a very promising offer and will leave the details to the Lord. Anyway, onto the Spirit side of things...

The night before Seth received an offer, I did something different. As you know Seth's health was failing quickly. He could hold his transfusions for 12 hours or less and then would need another to sustain him. He was sleeping a lot at this time and I could see we were headed down a scary path. I turned out the lights, I closed the door tightly, I pulled the curtains, I wept. I cried out to the Lord in the quiet of that room. I removed myself from every available distraction and found that sweet place where only Jesus and I were. Please understand, I seek the Lord daily, often moment by moment. I study His word to know Him more deeply and ask the Spirit to impart to me the Truths of heavenly things. My heart is for the Lord. What was different was my intention. I sought Him out and decided that nothing should distract me from hearing him, or more, Him hearing me. I wasn't begging for resolution, I was simply being sad with the one who knows me best. It wasn't contrived or thought out, it was just what happened in a few minutes of thinking how I wanted to spend my evening. I felt Him in a Holy way. It was the simple, beautiful presence of God. He was there with me and I was quietly sobbing my heartache.

When we seek the Lord and then see a marked difference, it is only reasonable to connect the two as one impacting the other. I do not think Seth's offer was solely contingent upon my praying, but do think it's true that God is economical in each of our lives and moves accordingly. I don't think that God held anything back from Seth because of my lacking anything, but His timing was instrumental in encouraging my heart to find new ways to be intimate with Him and seek Him.

So, here we stand, greatly anticipating Seth's recovery. If all goes well, we can estimate that he will remain in the PICU (pediatric ICU) for the next week or so and then back onto the "floor" with his beloved nurses where we have spent much of the time since August 7th. UCLA has been very good to us and very accommodating. The doctors are beyond admirable and the nurses genuine. All this is true, but home sounds really good...


Much love to you,

Sam

Third time was a charm...

Walking off to surgery...

If you haven't heard word yet, Seth received a liver yesterday afternoon. The surgery lasted from about 9 am to 3:30 pm. Oden and I tried to busy ourselves for the first couple hours, but due to the fact I hadn't slept in over 30 hours and the intense emotion, we found ourselves in a private waiting room off the side of the PICU unit where Seth would eventually be.

We heard from the head surgeon just about 3 pm or so and he came with good news. He said that Seth was responding well to the new liver and that it was functioning. At one point there was a hiccup with some bleeding for an hour or so but they were able to get it under control. He felt that Seth received limited transfusions, but for a baby that size, it was still a lot. The donor liver is a bit larger than Seth's, so he will go back into surgery at some point next week to finish up some undone procedures.

As it stands, Seth is under sedation most of the time. Daddy says he opens his eyes and looks around at times, but is another place and not there.

These next few days will determine if the donor liver is going to take. I can't express to you my relief for the transplant yet the complete fear that has consumed me. It is a paradox that I've never known and a cry that I've never heard from myself. Oden has taken post at the hospital while I get a much needed time of rest with Max and Jack. They have distracted me with smiles and cuddling, with tons of kisses and simple appreciation.

I won't write much today, but wanted to let you know the news. We will keep you up to date on Seth's condition as we know.

With love,

Sam

Awaiting word...

I would have thought I would be much more excited than I seem to be… Seth has a potential liver donor that the transplant team is looking at this morning. Its 12am and Seth is one day shy of his 6 month birthday. He also babbled mo-ma-ma-ma-ma today. So special…

The potential transplant scares the wits out of me. I can’t stand the thought of our baby hurting or being anesthetized for days on end. The surgery is one leg of the long road to be traveled, then we contend with the bodies’ acceptance of a foreign organ, then onto recovery and the bodies ability to repair, then how to live an immuno-suppressed life. It’s a lot. But I want to praise God in the midst of it. I want to shout from a mountain top that Seth belongs to the Lord God, regardless of the outcome of this morning or these days to follow. I want to be faithful and BELIEVE. Not because it makes me feel better, I think I’ve expressed to you already that the “feelings” actually get in the way and are not a compass by which I want to gage anything… It’s because that is where the truth lies. I am impressed upon over and over that Seth does not belong to Oden or I. We get no say in the matter. If we are created for God’s good pleasure, with God’s perfect purpose, it is beyond me to want for anything else, beyond what God sees fit. It is a constant struggle between the flesh and the Spirit. The body, the flesh, the tangible me, wants to hold onto the body, the flesh, the tangible Seth. That is not my choice. If I have faith, believing God for His perfect will, I will accept whatever the outcome of this long road. There is solace in that. When I am there, peace is here.

The short of Seth’s health to date goes like this… Seth’s numbers regarding coagulation slip every day, then he is transfused/infused (same meaning) and has a great next day, as the transfusions hold for about 12 hours. Then all the sudden, from left field, some random issue begins where his red blood cells diminish by half. Tonight they came in to look over his body for outward signs of inward bleeding. There are very minor appearances here and there, but nothing conclusive. His ammonia (toxicity) gets high and they try to treat for that by adding a double dose of medication, then he gets over loaded with meds and can’t hold them in. It’s not pretty quite honestly, but nothing medical typically is. I share this with you so you know the basic idea of what our days entail; hopefully it’s not too overwhelming and dreary.

So, I will keep you up to date on what happens next. Remember as you bear with us, receiving an organ has so many facets. It has to match anatomically as well as so many other factors. So if this is not the one, we will wait on God for another one. I am hopeful and thankful for what the Lord provides and for your prayers and thoughtfulness. We have been so supported by your love and friendship. Can’t wait until we are all rejoicing together in the Kingdom…


Agape,

Sam

Friday, September 18th, 2009

Dear friends,

It’s a new day and Seth smiles. He is so happy to see new faces in our room here and there. When the nurses come in, they tickle and play, while clothed in gowns and gloves. Seth loves it. I think he’s actually bored! Me too… We finally took a walk around the floor of this section of the hospital and Seth fell asleep. I think it has been about 7 days since we left the room at all. They practically made me go and even wrote it in the medical orders. I thought that was very funny.

I had an excellent cry with the Lord last night. I actually felt so badly when I went to sleep. Well, when I was supposed to be asleep, we were up the majority of the night. When I awoke this morning, it just felt like a new day. Seth was so tired-he received transfusions from about 1pm yesterday to 5am this morning. They were trying another approach to keep from fluid overload which can happen when too much volume is going into the body too fast. First they administered Benedryl, then, plasma to address his low clotting ability, then a diuretic to take off the plasma fluid, then potassium to counteract the diuretic that leaches potassium from the blood, then another dose of Benedryl to counteract the hives he gets from transfusions (which is common), then red blood and then…sigh… we slept for 2 hours… maybe. If the machines beeped one more time, though, I thought I was going to go crazy!

Anyway,they decided yesterday that Seth would be connected to an IV of Dextrose to ward off any unforeseen dips in his blood sugars as the liver is in charge of that too. What an amazing organ… Well, I was less than happy. All I thought about was how his sugars have never dropped, save one time- based on a less than reliable testing. He eats all day, whenever he wants and always has fantastic Accucheck numbers (glucose test). I put my foot down and needed a reasonable explanation.

They might as well have said, Seth will be hooked to this pole for which you cannot take outside with you, he will have his central line accessed at all times, so watch when he tries to roll over, it could dislodge it…also, you can’t go home, ever, you’re now a hospital baby, because IV’s don’t go home. I actually could go on…

The poor intern, she tried to explain to me the logic, but I was beside myself with need of understanding. It was her first day- she did not look happy. Luckily one of our primary dr.’s walked in at that moment and was able to reassure me that this was in Seth’s best interest and these are reasons A, B and C. I accepted and they proceeded to care for him the best way they know how. I want to always be sure they are not treating him for the sake of treating, but treating him individually, based on his specific needs, taking into account, his specific case. So, all this to say, that Seth is now on an IV. He really does need a liver and I must, I repeat, I must remember that God knows the timing of this gift that Seth will receive. We cannot make anything happen here, it must be a thing of divine timing and Oden and I have no choice but to rest in Him. It’s hard you guys. Really hard. But He does in fact sustain us. I’m not even sure how, but He does. We know He is faithful. Let me be faithful too, even in the most difficult times. Especially in the difficult times. This is where it actually really counts.

Please be in prayer for our children, Max and Jack. They are showing outward signs of being affected. I want to hold them and kiss them so badly. I haven’t seen Max in over ten days now and Jack only twice.

Please pray for Oden and I and our sanity. This is the hardest situation we have ever gone through, together as well as separately, and if you know us, you know we have both lived pretty crazy lives.

Please pray for the surgeons and nurses that they would see the light of the Lord while we’re here, and that they would have steady hands and sharp minds.

Please be in prayer for the families that lose loved ones every day and make the choice to donate organs and tissue. What an amazing gift.

That’s it for now. Waiting for the Lord to give me scripture to share on…


With mounds of love,

Sam

Wednesday, September 16, 2009

Thank you all for being faithful and standing with us in this mighty trial. Seth has been smiling here and there and can be induced into happy moments, but overall, he’s under the weather, as to be expected. He mostly nurses and sleeps these days as I watch the clock and hope for the hours to hurry by. Today marks 1 month on the donor list waiting for a precious liver...

Seth was placed on antibiotics for a potential case of sepsis. The way it was put was that it would be ridiculous not to treat him preventatively for something that can be life threatening. In his state, he is susceptible to so many illness possibilities that acting quickly seems to be the only choice. I ask so many questions in the hopes that there is some reasonable explanation for this or that, but all in all, Seth is just plain sick. So, two antibiotics to cover the gamut of possible infections in the blood while we wait for the 24, then 48 hour results. If the cultures were negative, Seth would be taken off the IV of antibiotics, if positive, we would be more than glad we addressed it quickly. The results came back as negative… In the meantime, Seth was having tummy issues, he just seemed uncomfortable and began vomiting his oral medications. He has always done so well with the 5 oral meds they had him on?! Some he takes up to 3 times per day, and some once per day. Well, it was obvious something was happening…

Just as he came off the other two antibiotics, he contracted a real infection that typically is found prevalent in nursing homes, hospitals and the like. Everyone who is immuno-compromised is susceptible to it, and Seth having a major imbalance due to the preventative antibiotics, contracted it- you know how antibiotics kill all the good and bad bacteria in the digestive tract. If any of you know me even slightly, then you know I have serious issues with germs! When I began to read on his “newly” contracted infection, it threw me over the top (as many things do these days). I wondered how I was going to keep Seth safe from germs when different people come in and out changing the trash, administering meds, touching door knobs and light switches. I have to admit, since we bear this road together, I have been in tears. Tears because Seth is sick. Tears because I can’t seem to keep him safe or take away his disease. Tears because when he’s treated for one thing, he contracts another. I had a very good cry today and am sure tomorrow will bring hope.

Our doctor (one of the many) came in this evening and we discussed Seth’s lack of stabilizing at a coagulation number that was reasonable. The liver processes blood and makes proteins among other things, and Seth’s is minimally doing this due to severe cirrhosis and “bad plumbing.” We coagulate at 1 and Seth is coagulating at maybe 2.6 on a good day and that’s with transfusions two days in a row. She insinuated that Seth was and is in no condition to return home anytime soon. My heart sank. I already knew this, but I sank anyway. My eyes welled up with tears and I began thinking how much I wanted Seth to be healthy and he just wasn’t. How much I missed being home with my husband and boys. It’s the simple things you appreciate.

I am looking at Seth a bit differently tonight. I am trying to understand that being on antibiotics in contrast to the happenings in the near future can’t even be compared. He will most likely be on antibiotics here and there for a year or more once transplanted, as well as be on many, many other meds. This is the beginning of a very long road. I sat here tonight wondering if the doctors think I am ridiculous for crying over these small matters when the “big” event is yet to come. I fight them on treatment to make sure it’s essential; I question all the meds to be sure they are required and effective, I count the blood draws to make sure they never take too much, on and on. I am beginning to see that I have very limited choices here, but can comfort and smile at my precious baby and that might have to be enough. I know we are in the best hands here at UCLA, as well, and more importantly, in the Lord’s hands too.

Max shared with Oden tonight that he was angry that mommy was at the hospital with Seth and not home. What a sweet daddy to ask questions and dig deeper to see how Max was feeling and help him verbalize what is coming out in his actions. He is so angry. Ugh… how I want to escape this whole things and just hold my babies, all three of them. Just to stroke their hair while they sleep or give words of comfort when they’re hurting. Oden and I are looking forward to when we’re on the other side of this. When the five of us can just rest together, see each other and enjoy one another again.

So all in all, the update is that we are staying here for now. Seth and I are in isolation due to his newly acquired infection. Oden will remain taking care of our precious 3 and almost 6 year old at home with occasional visits each week as he plays Mr. Mom (for which he is becoming quite accomplished I must say). As of yesterday, Seth had the highest level of need for a liver on this floor with his blood type, O positive. He will continue to receive transfusions every day to day and half to stabilize his blood and we will wait to see what comes next. It’s a day to day thing.

We will continue to trust in the Lord in the meantime and trudge through this fiery furnace. Thank you for being with us, for praying and for your tears. We look forward to rejoicing with you someday too.


Much love,

Sam

Monday September 14th, 2009

Ugh… As I posted last, I can’t blog fast enough to keep you up to date with Seth’s progress and set backs. It’s more likely better for now as a couple days ago we were packing to go home and now are more than glad and to be here.

We expect Seth to have set backs as his condition worsens and are seeing outward signs of it. Upon being admitted to UCLA again this past week Seth began preventative antibiotics for a potential infection they thought could be brewing due to his sleepiness. We have the results back now as they take 24, then 48 hours to grow, and they are negative, but now need to test to see if the antibiotics have caused an imbalance in his system. All the while, the doctors were very concerned about one dip in his blood sugar level, a severe indicator of liver disease. I am happy to say that his glucose levels have remained high and stable as well as within normal range. It was a slight scare, but only for the sake of caution. Nothing can go unnoticed.

While here, Seth’s body has declined in its ability to coagulate his blood even further. He remains on the donor list and has moved up in relation to need. There is a standard, national scoring system and as one gets sicker, the score reflects that and moves them higher on the list of need. Seth has a very high score of need at this point in time…

Sometimes it strikes me how this isn’t even the worst of it. I am eager for the “perfect” fit for a liver and all the while, I keep away from the reality of what that entails. The details are too much to bear, I think. It’s like keeping one’s eyes fixed on the prize, but the endurance is where much of it counts. My hope is that I will be sustained while enduring. I know if I cling to the Father in all things, if I commit my every breath and every tear, He is faithful to meet me.

A friend reminded me recently that I don’t have to feel Him. Him as in God. He is ever present. We know that, right? Often our feelings can dictate to us many things, how we feel, how we don’t feel, what we feel… on and on. I was feeling lost a bit. I was so sad my heart hurt. Even though I couldn’t feel, He was and is here. This where the rubber meets the road. Defense mechanisms of shutting down cannot dictate what is true. Aspects of the flesh cannot rule. Faith must take precedence. This is where we grow…


25 The other disciples therefore said to him, “We have seen the Lord.”
So he said to them, “Unless I see in His hands the print of the nails, and put my finger into the print of the nails, and put my hand into His side, I will not believe.”
26 And after eight days His disciples were again inside, and Thomas with them. Jesus came, the doors being shut, and stood in the midst, and said, “Peace to you!” 27 Then He said to Thomas, “Reach your finger here, and look at My hands; and reach your hand here, and put it into My side. Do not be unbelieving, but believing.”
28 And Thomas answered and said to Him, “My Lord and my God!”
29 Jesus said to him, “Thomas,[d] because you have seen Me, you have believed. Blessed are those who have not seen and yet have believed.”

John 20:25


With love,

Sam

Friday, September 11th entry

Feeling discouraged today. I am so thankful we came to UCLA this week, who knew the turn of events would become so serious. Initially we came in for the routine visit, plus sleepiness and now that has turned into the outward evidence of Seth’s struggling body.

We have seen many faces today in our room. Seth was transfused yesterday and this morning his am labs came back with worse results than expected. He has minimal internal bleeding and therefore, aspects of his blood are low. The hard thing we have to contend with is the potential that at any moment, he could take a turn for the worse. He is being carefully monitored and will receive antibiotics as preventative care for the possible infection that may be causing a dip in his numbers, as well as be transfused once again to replace what is being lost. The funny thing about blood, if you’re interested, is that they separate it out into different aspects. Most times Seth is transfused with a clear substance, but it is still of the same base. Today will be red, an indicator of severity. Luckily there haven’t been fevers and he is cognitively with us- all signs pointing to thriving. This is good. More to come… I can’t blog fast enough…

Wednesday, September 9th, 2009

Well, here we are again at UCLA. We came in yesterday for a routine visit to the “clinic.” I knew by the night before that the doctor would see what we saw, some sleepiness and some lethargic cranky behavior. Seth wasn’t feeling too well. He was easily induced into smiles and play, but it was not there on its own. That was different. In our situation, you hold on to every small thing as a possible big something… It’s not that we try to do this, but it just exists on its own. There will inevitably come a time, save God doing a beautiful miracle, where Seth will decline in this way or that way. We watch closely for changes…

The topic of blood sugar came up at our visit due to the sleepiness. We haven’t entered into the area where Seth experiences glucose issues, so I asked every other possible question to see if we could find another reason for a cranky, tired baby. I know! Maybe he’s teething! Simple, right? He chews his fingers, has an ever slight fever and is the right age. Nothing is this simple anymore. Seth needed to be admitted to UCLA, set up on IV fluids to rehydrate him (just in case), have his blood levels drawn, checked and then rechecked… Simple teething is still on the table as a possibility, but I am reassured that they want to rule all else out first to ensure he is safe.

As a parent, I am harshly reminded that I need to be on my toes and account for every medicine offered and fluid entering Seth’s body, for what length of time as well as why. Oden reminded me of this great email from someone who firmly said we are to be on top of everything at the hospital. Every detail. Well, I am feeling it right now. We had a bit of a tough day in relation to communication. Seth is fine of course, but my nerves are a bit rattled.

On a happier note, the possibility of coming home was casually spoken about while with the doctors today when they came to examine Seth. If they can be assured that he is not growing an infection in his central line and that he is not spiking fevers due to some unseen circumstance, they are willing to consider this. I didn’t even bring it up this time! They did! Well, we have a plan in order to address all these concerns and we will see what happens tomorrow.

A simple update for you for now as Seth is sleeping and now I’m off too. More to come very soon… The Lord has shown me neat thing in relation to Abraham again. Can’t wait to share…


Agape,

Sam

September 7th, 2009

This is a photo of Seth with very high bilirubin levels. They are down a bit since this was taken last week, but I thought it may help you understand his current state. From what I understand (and with my limited research to date) the liver processes the blood, acts as a filter and reroutes bile (among other things) to the proper ducting system. Seth is without this ducting system, so he is not routing any of these fluids properly.

I am getting a bit eager for our appointment tomorrow. While in the hospital, Seth was monitored so closely, and several times per day at that. We are now just waiting around, without any intervention, without feedback on his progress or lack there of. It's a bit disconcerting. I look forward to the day this is all behind us and Seth is on his way back to health.

Thank you for checking in with us and praying with us.


Much love to you all,

Sam

September 5th, 2009

Good morning friends...

Yesterday Oden and I had our first bandage change together. It's different when you have no others around and become the "professional." It has also become our responsibility to keep Seth's central line from clotting, therefore, administering saline and heparin daily. Our watchful eyes are ever busy looking for site infection, checking for fever and looking for signs of sickness. Seth's disposition is continually smiley and sweet. He is truly an amazing child!

We received a call from UCLA yesterday informing us that Seth's glucose was low and that we needed to be sure he ate at least every 2 hours as well as watch for excessive sleepiness. This eating pattern in normal for us anyhow, so I found the news disturbing, especially on a holiday weekend. Of course we have access to the on call Dr., but accessing that equates an emergency. With the news, our transplant coordinator stated that this just indicates that Seth's liver is "petering out." The verbiage is quite frank, but I appreciate the candidness and truth.

As I mentioned in the last post, we visit the clinic again this coming Tuesday at 2pm. I can't help but think that they may want to admit Seth again on the spot. It was pretty clear last week that our pre-transplant Dr. was not happy with his clotting factors and was hesitant to send him home. When the results were in, his factors had actually improved minimally, but it was enough to keep him waiting at home instead of in a sterile, formal hospital setting.

As I count the days we've been home, it amazes me that it's only 5 days! It feels like longer and yet, not long enough, knowing the things to come will include long hospital stays and many visits per week thereafter. Seth potentially will remain in pediatric ICU for 2 weeks or more. Yes, we are still holding out for a miracle...

I can't imagine having spent these last 5 days in that same room, with those same blood pressure tests all night and the same 4 walls. I am grateful to be home. Seth enjoys it too. He loves to hear his brothers laughs, cries and crazy play. He smiles lovingly at them as we keep them a bit at bay (for practice sake). He loves to be out in the front yard as the kids run by squealing and getting high fives. He loves the big tree out there too and is content to just roll back and forth on a blanket or sit on a lap.

I will leave you with scripture from my favorite book in the bible, the book of James. I love many others as well, but James has been a wonderful guidepost for me over the years and I love the direct instruction.

James 1:2-1:8
2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing. 5 If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. 6 But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. 7 For let not that man suppose that he will receive anything from the Lord; 8 he is a double-minded man, unstable in all his ways.



With much love and agape,

Sam

Max goes to school...

September 3, 2009

Life is going... Max started Kindergarten today. I wanted so much to be there on his first day and I was! Daddy spent time putting Seth down for a nap and keeping Jack company at home. Life has changed in so many ways and we know it will never be the same again. This is the part where I remember that God uses all things for good for those that Love Him.

Romans 8:28
And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

I know that we have deepened beyond measure. My cries have deepened, my pain has deepened and my heart for the Lord has deepened. He truly is our all and all and when I remember that, I am filled. When I remember that, Seth is perfectly okay in His grasp. When we remember that we are not alone in this, it becomes bearable and acceptable.

The Lord has reminded me by His word to give the sacrifice of righteousness, the sacrifice of praise, the sacrifice of joy. I have seen it several times in different scriptures, therefore, I see the Lord intends it for me. I say, what is sacrifice? How does one sacrifice righteousness? By putting away this things of the flesh and covering oneself in the Garment of Christ. Adorning ourself with the beauty and promises of the Word of God. Bathing in prayer and letting our prayer be an aroma unto the Lord. The sacrifice of Joy (Psalm 27:6) must be the kind where we count it all joy brethren... as found in the book of James.

All this to say, as I wait on the Lord, I dig in His word, I look for solace in His arms of Love, I am not trying to escape the health of Seth. I believe the God of all things can also easily invoke a miracle if He so chooses. Rather, I seek Him knowing that He is my saving grace. He is our saving grace. Whatever He chooses, Seth's life belongs to Him and He knew before the foundations of the earth were laid that Seth would suffer these physical difficulties and the outcome as well. I trust Him for that. I have to, but more so, I want to. Sickness, death and every ugly thing under the sun is the result of sin/separation from the perfection of God. This world is not our true home. I can rest in that.

Please be in prayer:

Seth's blood work numbers have somewhat stabilized. They are out of control without doubt, but he is stable there. Some numbers, such as his bilirubin and clotting are of serious concern, so please pray specifically for these.

Our home health nurse will come today to assist with bandage changing and draw labs (blood work) to check Seth's numbers once again this week. Please pray for efficiency and health.

We return to UCLA for a clinic visit next Tuesday once again. Last week they insinuated that Seth may not be able to be out of the hospital while he waits as transfusing presents a difficulty among other reasons. Please pray for God's hand here. I am thankful to be home for a time, but am concerned we will be back to UCLA too soon.

Praise report, Seth has not been transfused in over 8 days! This is going from daily to every other day, to none in 8 days! Amazing.

Thank you friends and family for bearing through this with us. We love you and appreciate and need your support during this time. We have been advised to steer clear of any colds/flu like symptoms as well as have no one in the home to prevent Seth from missing an opportunity to receive a liver when and if it becomes available. They will not even attempt to transplant anyone with a slight cold as too many others are waiting to take any chances. Immunosuppression would throw a fragile state into a potential loss due to pneumonia, etc.


With much love and warm hugs,

Sam

Still Smilin'...

Strike One...

Well, it's official, we had a primary offer for a liver Sunday afternoon. Strike one is appropriate in that you may get many seemingly good opportunities, but until the organ is seen visually, it is never guaranteed. On screen (scan) and on paper this organ seemed right or close enough, but once examined, too large for Seth.

We're okay. We were the evening we were told it was a no go and we are still. We want the perfect "puzzle piece." Our hearts were wrenched for the family who lost their teenage son, and excited for the receiving family that will get the gift of life (here on earth).

Believe it or not, Seth and I are home! We discharged yesterday afternoon and slept in our own bed last... we are getting accustomed to things that are normal, but boy does everything feel like a dream state.

This entry will be short and sweet as time is limited during the day! We go to our first clinic visit today at UCLA to do blood work and check up on Seth's stability. It is overwhelming as well as exciting to be outpatient.

More to come very soon. Thank you for your prayers and loving support...


Sam

How About a Smile...

August 27th, 2009

The Lord has encouraged me once again to share what He has shown me. A brother Facebook’ed this Psalm reference and I had already begun writing on it…

"Here me when I call, O God of my righteousness! You have relieved me in my distress; Have mercy on me and hear my prayer.

How long, O you sons of men, will you turn my glory to shame? How long will you love worthlessness and seek falsehood? Selah

But know that the Lord has set apart for Himself him who is Godly; the Lord will hear when I call to Him.

Be angry and do not sin. Meditate within your heart on your bed, and be still. Selah

Offer the sacrifices of righteousness, and put your trust in the Lord.

There are so many who say, “Who will show us any good?” Lord, lift us your countenance upon us.

You have put gladness in my heart, more than in the season that their grain and wine increased.

I will both lie down in peace and sleep; for you alone, O Lord, make me dwell in safety.”

Psalm 4


How beautiful are God’s promises? When it says that the Lord has set apart for Himself him who is Godly, I am reminded of Seth’s life belonging to Him. He is faithful to hear when I call. When we call. He allows for the anger, sadness and tears and reminds us NOT to sin. He has instructed me, praise be to him, to sit on the bed, the bed for which we are bound for hours at a time! And meditate within my heart and be still. I can feel Him saying call out to me and me alone. Seek me out.

Seth will remain in the hospital until he receives a new liver or until his blood stabilizes. Our doctor reviewed with me that Seth’s numbers (pertaining to blood work) have not stabilized in the three weeks we’ve been here. Typically, he is receiving transfusions every day to day and a half. This makes going home unsafe to be sure.

Please be in prayer with us that Seth’s numbers stabilize, that God would heal him according to His purpose and way…

Agape friends and family.


Sam

Fong Boys Trio

Monday August 24th, 2009

I began reading a book by Jon Courson this morning entitled, A Future and a Hope. In the beginning was the chapter entitled, Only a Test. The great thing was the scripture that prefaced it. Something the Lord had already shown to me, therefore, a confirmation…

And it came to pass after these things, that God did tempt Abraham, and said unto him, Abraham: and he said, Behold, here I am. And he said, Take now thy son, thine only son Isaac, whom thou lovest, and get thee into the land Moriah; and offer him there for a burnt offering upon one of the mountains which I will tell of thee. Genesis 22:1-2

I had thought last week about how Sarah and Abraham wanted a child so badly and he came, but in the Lord timing, way past when they thought they would have him. Regardless, the love a mother and father feel for their child is so deep and profound, they idea of sacrificing them in any way, is just beyond comprehension. But God called (for whatever reason) and Abraham answered. It is revealed later that Isaac was not required by God, but Abraham’s faith was. I want to have this faith…

If this is a test, I don’t want to be consumed by the WHY’s- why us, why Seth, why would the Lord allow this… In fact, I praise God I haven’t asked Him, because truth be told, it doesn’t matter. It is what it is. It does happen to families. Did I ever think anything this horrible would happen to ours? NO. But it has and it did. “Why” is less of a concern than one would think. I want to focus on the prize. The Lord is able. The Lord is good. I/We belong to the Lord most High and all things are possible through Him. I want to say YES and AMEN. To be reminded that this world is not our home. That as the flesh is temporal, so too are our wounds and trials. GOD IS GOOD. This I know.

So much comfort is coming from worship songs where the truth is called out and the words run deep. He would have us to praise Him in the midst of our trials. To call out loud and heartfelt. He reminded me that “ I can do all things through CHRIST JESUS who strengthens me.” Who? Christ Jesus.

Coming out of the darkness of the weeks past, I am able to praise the Lord in the midst of the trials. Not by my strength or by my might, but by HIS. We don’t know exactly why God called Abraham to bring Isaac, but he was faithful to it. I don’t know why Seth is so sick, but he is. I want to have faith even in this place. God has been good in encouraging my heart, uplifting me and bringing me out of dark places and into the light where He is. But, I have to seek Him, He has also been gracious and tender, giving verses and reminders of His love. The answer to WHY is of no consequence. The faith practiced as we endure this is of ALL consequence…

Seth is happy. Can you believe it? Believe it! He is joyful and happy. He laughs and smiles at everyone. He has begun talking and he’s loud! I love it. I put him on the phone with Oden and he talks to his daddy too. He brings joy to all that see and hear him, his joy unwavering. When he needs a procedure, he gets it, recovers and smiles again. Boy is he pure. My hope is that he will bring glory to the name of Jesus, his demeanor reflecting the goodness of God. It reminds me of Paul in prison. He served God. He was about his Father’s business…

Specific prayer requests:

Seth is receiving many blood transfusions today. Last time he received this much, he was unable to be woken and we worried he slipped into a coma. Please pray that he will metabolize the benadryl (for hives) and be sedated just enough that they can do his procedure and wake with ease. He wasn’t breathing very well earlier, although has seemed to recover.

Seth will receive what’s called a central line that he will have with him for about 1-2 years. This should take place in the early morning hours tomorrow. Please pray for steady hands, efficient use of sedation and finding the perfect path for the line. Last time we went for this line, he came out with a very temporary, surgically placed line. He will be trading one for another, temporary for more permanent. This enables the nurses to draw blood work for labs and administer medications without “poking” Seth.

Please pray for God’s Perfect Will in relation to healing, to receiving a donated liver and to his over all health. Did I tell you how amazed the doctors are at how “robust” Seth is? Pretty uncommon for his diagnosis (for which they assured us is Biliary Atresia with absolute).

Please pray for a calmness of spirit. For God’s perfect peace- the kind that surpasses all understanding and is in no way finite. For a steadfast heart.

Please pray for our children, Max and Jack. They are at such tender ages, coming into their own. Max will begin Kindergarten soon and has never gone to school a full day. Jack is 3- need I say more? He needs a lot of love and patience.

Thank you for all your prayers, your kind words, your goodie bags that were sent… for the financial and emotional support we’ve received. We are so thankful for loving saints, loving family and good friends. We are thankful to the body of Christ who has unified in prayer. Let us all remember to pray as fervently each day to the Lord our God about all things. He is waiting, He is listening. The intensity we feel now should be the fervor we feel always for Him. He loves us without reservation. Isn’t He good? May we commit to Him as He has committed to us the love and blood of Jesus for in which we have redemption..

In His arms of love,

Sam (& Seth)

A Beautiful Face...

Welcome to Seth's Story

Thank you for visiting... If you've arrived here, you know Seth Samuel Fong, the youngest son of Oden and I is sick with liver failure, Biliary Atresia to be exact. I've chosen to blog to keep all updated, to express the specific needs for prayer and to find an avenue to keep in touch with the outside world...

The story begins with a healthy pregnancy, pretty uneventful birth and a smiley, joyful baby. Our only concern about his health was that he had jaundice which would not go away. We tried the normal, diffused sunlight, changing his diet, etc. Nothing was working.

At about three months old (Seth is 5 months old), Seth's tummy began to bloat. We took him to a specialized pediatrician who at once became seriously concerned. He felt Seth's tummy and checked his eyes. He said he didn't want to cause me fear, but that something was VERY wrong with Seth and he wanted me to go to a lab as close to Hoag Hospital as possible, draw blood and to get the lab results "stat."

As I drove to Hoag I was horrified, knowing something was terribly wrong. I waited in the lab for my name to be called. My best girlfriend Anne was on her way. I believe she knew too. She arrived in time to pray with me and come in with me as Seth had vials of blood drawn.

With this simple test, we had the results by 3pm. the doctor had given me his direct number to call him if I hadn't heard from him by 4pm. He called at 3. He had already made a call to a collegue here at UCLA Medical Center in Westwood. He informed me that Seth's results came back with very serious results and that the doctor from UCLA would be calling me to talk details, but in the meantime, I was to pack a bag for a few days at the very least as Seth would need to be admitted ASAP.

This is the beginning of the story... as I weep, I remember so well, knowing we were in serious trouble. That our sweet baby boy Seth was facing a very terrible prognosis.

Hopefully this is a good start to help you understand our beginning... I will blog more as time allows. This is a very rare moment where both Dr.s and Seth rest from treating and addressing the needs of this Biliary Atresia.

Please know that we need you right now. We need you who are reading to stand in the gap for our strength. To call out to our Lord Jesus Christ for a miracle, for His perfect will and His Healing Balm. We are truly at a loss. Our hearts are broken. Our family split up and apart. If you know us, you know this is so rare to be apart. Oden is learning how to parent as a single parent and I am learning how to hold my baby after his pain and suffering can't be helped.

We are reminded by so many of the love we have one for another. We covet you right now and thank you for all that you do, but most importantly for your calling out to the Father who knows all things and knew before the foundations of the world were laid that Seth would be here. That we would be here. We agape you and thank you.

With love,

Sam