Tuesday, December 30, 2008

Home Sweet Home!

After nearly a month in the hospital, we are finally all home and together. It was so good to get home, but I must admit it is also a little scary to leave the constant care of nurses and Dr.'s. Levi was so excited that Lukey was home, he tore up the stairs and into his room to see him. Lukey's face just lit up with a huge smile. They have a very special relationship and Ben and I don't realize the toll it takes on them too. Levi has a very hard time when Lukey is in the hospital.
Upon our arrival back at home, we were faced with new challenges. Like getting the feeding pump working properly. I almost lost my mind. I felt serious rage towards that feeding pump. I left my directions for making a huge batch of Ele-care formula at the hospital, so I had to go by memory with the measurements. It was definitely a first night back. A little stressful, but so nice. Lukey is on so many medications. It starts at 6am and the last one of the day is given at 11pm. It's something we just have to get used to. With my brain only functioning at 70%, I just have to follow my med schedule. As time goes by, he should go down to 1-3 meds. He will always take them though. The Prograf is what they call his Lifeline. It is what he will take for the rest of his life to avoid liver rejection.
We will have to go into the clinic at Georgetown 2-3 times a week for a few months. We are also getting ready for Lukey to start back on the chemo. By the beginning of next week I'm thinking. We will find out tomorrow. We are almost there. Two more rounds of chemo and my little man will be done with it.
All we need now is to get Lukey to eat on his own. He is still throwing up and not wanting to take anything by mouth. They moved his feeding tube down into his small intestine, so he doesn't throw up formula anymore, just phlegm. He is so congested in his head that he swallows everything, then throws it up. He is also on breathing treatments to help with the congestion. I really want him to eat. The feeding pump is such a major hassle. Please pray Lukey starts eating again. Otherwise, he is doing great. His liver function is really good. We are just so blessed and thankful that saying thank you seems like not enough anymore. We could not get through this without you. You all have done something that has made this time easier. We are all incredibly exhausted and hoping to catch up on some rest before starting chemo. I have just one more med to give and I need to start his new feeds back up, then it is night night for me. I sure hope Lukey sleeps tonight. He took a very long nap today and I was able to do all the laundry and clean up. Tonight, I just want to sleep.
A quick update on my pregnancy. I am 16 weeks along and I heard the baby's heartbeat today and saw (her) moving all around. (She) is a wild one. I don't know that it is a girl. But I Believe!!
Happy and Blessed New Year to you all. Thank you for keeping us in your prayers. We love and appreciate every one of you.

Friday, December 26, 2008

Fernando Family Christmas

Our Christmas Miracle!

The Fernando Family celebrated the birth of Christ at Georgetown Hospital this year. We actually had a very nice Christmas. We had our little tree and most importantly we were all together. Ben did the presents and stockings in the morning with Levi and then came to the hospital in time for Santa's arrival.

Like Ben said in his post, we had Subway for lunch. Very festive!! The good thing is we can't say we over ate this Christmas. For dinner, our wonderful friends brought us food and sparking cider and yummy chocolate cake. We had a great day. Santa brought lots of gifts and then several others stopped by with presents. Levi and Lukey got more presents this year than we know what to do with. So many generous hearts reaching out to the children and families in the hospital..it's wonderful.
The boys in uniform came and delivered gifts.

Later in the evening though the day got interesting. I was looking at Bens sweatshirt wondering what was on it. It was a big stain looking thing. Then I looked down at Lukey and the whole front of his pj's were bloody. Well, you can imagine my reaction. We thought that the clamp on his line had been rubbing on his incision and it came open, but once they got it cleaned up they noticed that there was still blood coming from somewhere. His central line had a hole in it and his blood was dripping out. The nurses paged surgery and one of the Dr's came up. They were able to repair the line by cutting off the bad part and gluing on a whole new bottom. We were very thankful that it did not need to be removed and a new one put in. But since you can't use the line for 6 hours until the glue dries they were going to have to start another IV on him. It was very late by this time and I headed home with Levi. I talked to Ben on the phone and he said they were unable to start an IV on either foot. My poor baby...going through unnecessary pain. They gave up and decided to wait until the glue dried. Lukey slept pretty well last night which means Ben got some sleep. I'm getting ready to head to the hospital with Levi, so I'll update again in a day or so. God Bless you all, I hope your Christmas was wonderful.

Thursday, December 25, 2008

On this Christmas -Love, Joy and Everlasting Peace

What a historical day...For unto us a Child is born, unto us a Son is given... As I meditate on his word this morning, I couldn't stop noticing the impact Christ made on earth and more specifically, in my life. The words that came to my mind are... redeemed, favored, forgiven, peace, and joy--that is not of this world. When you're going through a valley of shadow of death you learn a lot about God --His peace, healing, strength, resurrection power, mercy, etc., and at the same time how weak and inadequate I am -- as someone said "glorified dirt!" Jesus came to the earth for a purpose and although he knew the suffering and sacrifice that was required, He served with joy. What a humble beginning -- like Levi says "smelly stable with cows and sheep :)" but how glorious was His redemption. It is his love that changed the world, and he paid sin with His life, so I can have life and life more abundantly. His agape love can transform lives and it has certainly done that in my life. Although my love is still failing, His grace is sufficient. The challenge that my family and I will accept on this Christmas day is not only walk closer with Him but also to let His light shine upon someone else.

We're at the hospital but I thought we had one of the memorable days. Since we didn't get to go home, we tried to bring home to the hospital! Jen did a good job of organizing everything. We didn't let our journey get us down because to be honest, we are in a better situation than lot of parents on this floor. We had many folks that were treated yester-years come by with presents for Lukey and Levi, and it was nice to see them doing well. We tried to order out but most of the restaurants in Georgetown were closed so we had our Christmas lunch by courtesy of Subway "eat fresh!" Our Sri Lankan friends, Trevor and Dhammika, are bringing dinner for us, thanks guys.

We are grateful to all of you for your continued prayers and support. We are the most blessed people on earth to have the love and support of our team, who have rallied around us in the last 5 months. Like I said before, when you're going through hell, the heaven is worth the journey with people like you.

We wish you and yours a very Merry Christmas -- let Lord's favor be with you and may you be granted love, peace of mind, and joy.

With love and best wishes.

John the Baptist
And this was his message: "After me will come one more powerful than I, the thongs of whose sandals I am not worthy to stoop down and untie. I baptize you with water, but he will baptize you with the Holy Spirit." (Mark 1:7)

Isiah the Prophet
"For unto us a Child is born, Unto us a Son is given; And the government will be upon His shoulder. And His name will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace." (Isiah 9:6)

Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins. So all this was done that it might be fulfilled which was spoken by the Lord through the prophet, saying:"The virgin will be with child and will give birth to a son, and they will call him Immanuel"—which means, "God with us." (Mathew 1:21-23)

The angel went to her and said, "Greetings, you who are highly favored! The Lord is with you." Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end. "How will this be," Mary asked the angel, "since I am a virgin?" The angel answered, "The Holy Spirit will come upon you, and the power of the Most High will overshadow you. So the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For nothing is impossible with God." "I am the Lord's servant," Mary answered. "May it be to me as you have said." Then the angel left her. (Luke 1:28-38)

Mary's Song
And Mary said: "My soul glorifies the Lord and my spirit rejoices in God my Savior, for he has been mindful of the humble state of his servant. From now on all generations will call me blessed, for the Mighty One has done great things for me— holy is his name. His mercy extends to those who fear him, from generation to generation. He has performed mighty deeds with his arm; he has scattered those who are proud in their inmost thoughts. He has brought down rulers from their thrones but has lifted up the humble. He has filled the hungry with good things but has sent the rich away empty. He has helped his servant Israel, remembering to be merciful to Abraham and his descendants forever, even as he said to our fathers." (Luke 1:46-55)

Tuesday, December 23, 2008

Luke Update

Well...I'm finally posting something. Tonight I came home and Ben is staying at the hospital. Last night Lukey just would not sleep. We are still in the hospital because Luke can't stop throwing up. We are preparing to be there for Christmas, though we are still holding onto hope that we will get to come home tomorrow. Luke had pulled out his NG tube (feeding tube) so they decided to keep it out and try feeding him. He did really well for a day, then stopped eating altogether. They put the tube back in and he is being fed and getting all his meds through the tube. It's actually so much easier to give him his meds that way, but I would love for him to start taking a bottle. He will go home with the ng tube, so they had to come and teach me how to use the pump and fill it with his formula and what not. On top of that he is now going home on 11 different medicines, all with their own instructions. I am now officially a home health nurse.
Lukey after he pulled out his ng tube. He looks like his old self.

Levi, keeping himself busy at the hospital.
Luke has had so many problems with formula, he is now on a special pre digested, hypoallergenic formula. If anyone would like to donate some breast milk, I'd happily accept. Seriously...I thought about going on Craig's List looking for breast milk. During his stay in the ICU...I just could not produce anymore milk. Maybe due to the pregnancy too. Levi has been coming to the hospital and getting spoiled by the Child Life Specialists. They have a big play room, with all the cool Wii games and activities and crafts. Today he was eating pizza in there and playing Wii, while I was gagging on meatloaf and cleaning up vomit. The hospital really does do a lot for the kids that are in during the holidays. We have had two visits from Santa and one from a family that always donates toys to the kids. On the outside of Lukeys door is a basket where Santa's helpers put a little treat in everyday. We desperately want to be home for Christmas, but will be happy where ever we are. Lukey's bottom teeth are also coming in, which adds to his irritability. His incision is healing nicely and his eyelashes and eye brows have come back. His hair is growing in fast too. He looks way more like Ben now than before. Well I had just 3 hours of sleep last night, so I will post some pics and say goodnight. Thank you everyone for all the cards and cookies and meals and prayers..oh and livers (Uncle Michael). We are so grateful I just can't even express it with words. This has been the most difficult time of our lives. I feel like I have been walking through the valley of the shadow of death...but my comfort is that I know I don't walk it alone. The Lord is with us..and he has put so many people in our lives to walk with us through the valley...all the way to the mountain top. We'll get there!! Nana and Uncle Michael's last visit before flying home
Levi loves his baby brother.
A happy Lukey. I love how they let him wear his own clothes instead of a hospital gown.

Sunday, December 21, 2008

Post Transplant Day 16

We are still at the hospital, as Luke has been experiencing some pain and feeding related complications. These are just a few hiccups but we are so anxious to get home after almost 3 weeks of hospital stay! However, we are pleased with the care we get here at the transplant unit and they are keeping a close tab on Luke's progress. No matter how long it takes, we want our precious man to feel comfortable and without pain. He's the one who endured the surgery and related pain, we were there for the journey! So, he gets what he wants. Please pray with us that Lukey will be home for Christmas -- that will make this Christmas very special to me.

Yesterday Michael flew back home and I was so happy that he was able to be with his family for Christmas. The gift he gave Luke will always be special and his reward will be in heaven. Thanks Michael, Ellen, and Emmy Lou for your love and sacrifice -- we are eternally grateful to you. Thanks to Nana as well for spending time with Levi, and providing excellent care to Michael!

Thank you for stopping by and being so thoughtful in the midst of the busy season. Your prayers for Lukey and for our family is very much appreciated. God Bless!

Friday, December 19, 2008

Bumps on The Road

Luke is recovering well but with some minor set backs. He's running a slight temperature while still battling the liquids in his lungs. The Dr is concerned with Luke catching pneumonia. He wasn't drinking his milk so the ng tube had to go back. Please continue to pray for our little trooper and his new journey.

Jen and I have switched places the last couple of nights. Although it seems night and day compared to ICU, the transplant unit is still not a very comfortable place for my pregnant wife and I hope to take over the night shifts from her, tonight. I was back at work the last couple of days, as our planning and budgeting season is in full flow. Levi spends most of his time with Nana, and it is such a comfort to have her around. Unfortunately, Nana and Michael will be flying back to Reno on Sunday and we're looking for someone to fill in the gaps! Well, God has provided in the last 5 months and for sure, he will make a way. Levi is the ultimate 4-yr old brother for understanding the times and sacrificing, although,unfortunately he has not much choice in this, after all.

Jen didn't have access to a computer for the last couple of days but I know she wanted to update you soon. Thanks for your prayers and support. We appreciate our team and we couldn't have made it this far without God's help and your prayers.


Wednesday, December 17, 2008

Downgraded to "Gold" status

Just a quick update to say that Lukey was downgraded from "ICU" status and was moved to Transplant unit last night. His new status is called "Gold" and I'm trying to figure out why they call "Gold" for staying at the hospital, no matter what status you're in :)

Thank you so much for your prayers. Also, it seems like my greatest Christmas gift "Lukey home for Christmas" is coming true. Please keep him in prayer that he will continue to improve and regain his strength every day. Please pray for Levi as well, as he, like Jen and I, went through all these changes last 4 plus months and needs God's touch.

We will be getting some lessons on our new "normal" life and how to care for Lukey. We thank God for saving Lukey's life and letting us care for our precious boy. He went through a lot already and he keeps inspiring me of the fight. I don't know why he was the stat 1:1M, but I know God strengthened his body to be able to endure the pain. Please keep the children and families that are going through this journey in your thoughts and prayers. It breaks my heart to see children suffer and I think my ministry was confirmed in the last few months.

Thank you very much for your love, thoughtfulness, friendship, time, kindness, sensitiveness, etc etc. We really appreciate you.


Tuesday, December 16, 2008

Some pictures to go with the other update

Well I had planned on giving an update last night, but I fell asleep. My husband picked up the slack for me and gave a wonderful update. I was so excited yesterday that they took Lukey off the ventilator. It was the first time I heard him cry in 12 days...and it was music to my ears. Ben definitely needs a night at home to sleep in his own bed. I hope they move Lukey out of the ICU soon. I hope he can come home for Christmas. I'm going to post some pictures since most of the updating has been done. Today Levi gets to go see his baby brother...and he is soooo excited.

Uncle Michael, my cousin Veronica and her husband Ben all came for a visit.

Lukey still sleeping...he wakes up for short spurts and then goes back to sleep.

Here's one of his wakeful moments...I could not get him to smile though. He just stared at me. The nurse kept putting his blankie on top of his head for some reason. (The nurse from the previous blog entry.)

After they took the tube out he was very agitated. His cry was weak, but beautiful. They had to clean all the tape stuff off his face too...he was just mad.

No tube...and all tuckered out from the whole ordeal. See there's that blankie again. I love that I can finally kiss his kissable cheeks. I'm still waiting to be able to hold him.

Monday, December 15, 2008

Day 10 Post Transplant

Well, Luke's exterbated from the breathing machine. This is a great milestone towards getting downgraded from ICU status but due to the fluid overload he's not out of the woods yet. Please pray that he will do well tonight that he will not have to go back on the ventilator. I'm praying for my greatest Christmas present ever -- Lukey home for Christmas!! And cancer free!!!

Today was rather an off day for me, as I was little agitated with Luke's nurse. She was tossing and turning him this morning and when I saw Luke's tears it just broke my heart and the warrior in me came out! But unfortunately it was just the beginning. She left Luke for hours at a time, unattended. Finally, in the evening, I had a chat with the charge-nurse and made sure that my boy and this nurse cut ties in the future :) You can see that I had logged too many hours at the PICU and need a chill pill!

In one of my previous posts I had mentioned about a child that was put on the life support... well, she's a miracle baby! When her cancer (Neuroblastoma) just about consumed her, the dr at Georgetown had the wisdom to seek help for her on an international drs blog (I think). And a dr in England had seen this and called Georgetown with the drug he used on a patient with a similar cancer in the UK, and when they gave her the drug, she had immediately responded. Timing couldn't have been better, as she was just about to go through a major/risky surgery. Too much providence in this to be called good old "lucky." Tonight she's a miracle child fighting hard to hold on to her life. They have reduced the support by the machine and she's getting better! The parents are praying hard and they were jubilant of the hope they now have. Please say a prayer for this family for strength and healing.

Michael continues to improve at home. He's getting pampered by mum's care! I hope he will get dr's approval to fly home soon to be with his wife, Ellen and little Emmy Lou. We thank God for them and the healthy liver Michael so wonderfully took care of! We were told that Lukey's new liver is functioning almost "normal." It will take a few more days to reach the "normal" status but as the surgeon outlined..."it is beautiful!" Praise God! The journey was rough but it was well worth it and most of all, life saving. Through it all, we give God the glory. We thank Dr. Crowley at Ashburn Pediatrics for discovering the tumor at the 6-month "well" baby visit and giving us the time to fight it. I'm not the one to call this -- "lucky."

Hope your Christmas plans are coming along well. Thank you so much for stopping by to read about our journey. We appreciate and love you very much. Good night!

Sunday, December 14, 2008

Day 9 Post Transplant

Sorry about the delay in this post. We're still in the ICU due to the liquid overload in Luke's body. As you can remember, the day after the transplant surgery, they discovered a blockage in an artery and there was backflow of blood. This prompted the BP to drop and subsequently pumping about 900ml of liquid in a short time to stable the BP. Then they started aggressively removing liquids, which they did but BP started dropping again. Then for the 3rd time, last Friday they saw a BP drop but was quickly gotten under control with about 350cc of liquids, mostly thick Albumin, which helps pulling the water off of tissues into the veins. Since then, things are fairly stable and we are praying that Luke’s body starts accepting the fluid shifts and starts excreting liquids. So, there is no set goal by the drs., but they are letting Luke handle the liquids in his own time but giving him Lasix to gently push the liquids off through urine.

It’s been an experience spending nights at ICU. The bells and alarms through the night, and army of nurses running from one room to another addressing the emergencies. It could be overwhelming experience, but my prayer has been “God, please let your peace be in me.” However, I’ve had my share of anxious moments with all the alarms and frequent reports. I found out how weak and desperate I could be. As a parent, it is tough to see your baby go through these times and I must admit I came close to asking “my God, my God, why have you forsaken me.” But my walk with God has taught me that times like this is where God shows up – exhausted and almost at the end of our human road! It amazes me how he shows up. In the last 4 months, Jen and I have leaned on Him more than anytime before in our marriage and He has never forsaken us, He has always come through – not in our time but His own!

Talking about the last 9 days in the ICU, I’ve participated in the daily drs rounds and have become somewhat proficient at how they handle Luke’s care here. I’ve asked so many questions and watched the nurses care for Luke. It is very scary when you see even the best nurses make mistakes. I remember reading a blog from a fellow parent, who went through a similar experience to what we are going through, and what she said about care at the hospital…”you are your son’s only fulltime nurse.” I’ve come to experience the profound truth in that statement and why I need to pray for the medical staff. All my questions may seem like I’m too curious or that I’m undermining their expertise, but Luke’s my 24/7 and only patient and most of all God has placed me to care for him while I’m on earth, so I’ll do what I have to do.

This is where I take over. (Jen) I just relieved Ben at the hospital and he didn’t quite get to finish what he was saying, but I think I can finish it for him. God is so faithful and has really taught us to trust in him alone. Ben is so awesome, he has stayed at the hospital every night for the last 9 days, and he plans to stay every night until he is out of the ICU. It has given me some time with Levi at home in the evenings and a proper bed to sleep in. We are hoping to be out of the ICU by Tuesday. Please pray the extra fluids leave his body, especially the lung area. I’ll try to do better at keeping you posted.

Friday, December 12, 2008

BP and ECG

Luke's BP and heart rate are on the lower side tonight. I've been praying for God's touch. I read the word and believed that God has already touched him ..."and the people all tried to touch him, because power was coming from him and healing them all." Luke 6:19. It is just passed midnight, and after about an hour, Luke's BP is climbing up --Praise God! God has really taught me the power of standing on His word and calling His name, and most importantly believing that as it is written, it will be done. Very hard process, especially when you're child's life is on the line. But there's no one else I'll rather call from my vantage point. Oh by the way, his ECG is slowly increasing as well. Please stay in prayer for Luke.

Today was a rough day for a couple of parents, as they had to witness their children near extreme critical status. I had to put my arm around a dad who saw his 14-month old daughter get put on life support. I have seen ER on TV but nothing close to the reality I see here at ICU. I just don't know how people face this without God. I know I will be lost without him-- as the song "I can't even walk" that we used to sing in our church, if not for Him and the people he sent to help us through, I can't even imagine how this journey is possible for Jen and I.


I thought number one would surely be me,
I thought I could be what I wanted to be.
I thought I could build on life's sinking sand
But I can't even walk without You holding my hand.

I can't even walk without You holding my hand.
The mountain's too high and the valley's too wide.
Down on my knees, I learned to stand.
And I can't even walk without You holding my hand.

I think I'll make Jesus my One and my All
From now on when in trouble, only His name I'll call
And If I can't trust Him, I'll be less of a man
'Cause I can't even walk without You holding my hand.

There's so many times a day that I think about all the wonderful people we were privileged to have around us. I thank God for all of you and nothing that we can say or do will ever capture what you have been to us in getting through each day of this journey. Your prayers, meals, words of encouragement, comments on the blog, donations, friendship, time, and steadfastness have shown us how much love can heal. I remember my trip to Sri Lanka after the Tsunami, and in my mind a simple act of love, how much it impacted the children that were devastated. Like Jen, I'm more accustomed to giving and it is humbling to be on the receiving end. Life is but a shadow and it passes by so fast, and I think what matters in the end is how much difference we made in each others lives. With that prophetic thought:), I'm going to try and get some sleep. Good night!

Thursday, December 11, 2008

Posting Some Pictures

I just wanted to post some pictures for you all to see before I leave for the hospital.

Uncle Michael finally gets to visit Lukey.

My sweet, precious Lukey

Lukey gets a visit from Santa, and Santa leaves lots of gifts for him.

Levi gets to see santa at The Teardrops to Rainbows holiday party. I overheard him asking for a football helmet. Santa said he would tell the elves.

Lukey has been doing well last night and this morning. Please keep him in your prayers. Uncle Michael is now recovering at home, please pray for a speedy recovery so he can be home with his family for Christmas.

Wednesday, December 10, 2008

Wednesday Evening at GUH

Luke had a good day today. Thank you for your prayers. His BP and heart rate stayed stable, and the new liver is making progress. I'm believing that he's going to have a good night and that I will get some sleep in my new found recliner!

This afternoon Luke had his first picture taken with Santa. Although Luke was sedated and didn't get to sit on Santa's lap for the picture, I'm convinced now that Santa is real and he comes by when you're sleeping... but you must be good! Much thanks for Fairfax Police Officers for organizing that event.

Michael was discharged from the hospital this afternoon!! Jen was giving him a hard time about his new look :) Thank you so much for your prayers and please continue to lift him up as he recovers at home.

They up the sedation on Lukey, so I haven't been able to make eye contact with my trooper today. I can't wait to hold him soon. I trust in the Lord for his healing --Lukey is cancer free, I believe that in Jesus name. I pray for those children that were succumbed to this monster and let peace be still for the parents as they cope with the loss of the baby during this season.

God Bless you and your family.

Update on Luke

Luke held on to stable BP levels and had a fairly good night. Thanks for your prayers. This morning his ECG (heart) rate is on the low side and they are keeping a close eye on that. I anxiously pray for Luke to do well today. It is a daily walk and I do not want to get too ahead but I claim in Jesus name that he's home for Christmas! Also, as I noted yesterday, I believe in Luke to do well enough that they will take him off of the ventilator by tomorrow evening. Please pray with me and believe that it is done.

Overnight he's fluid output was good and we need that to continue. His glucose level was high, as they started the TPN (liquid food) yesterday. I think the dr will make the adjustment there this morning. He's breathing, immunosuppressant levels, CVP, etc need some improvement today.

All in all, he's stable and slowly progressing. Today will be a great day for Luke -- in JESUS name!

Michael is doing much better today. He's my All American hero - Life saver (Luke and a recipient on the list), 10 yr Army veteran, father, husband, and one of the most humble people I know. If you have an opportunity, please send him a card with a word of thanks --20423 Middlebury Street, Ashburn, VA 20147. He reminded me of the price Jesus paid for me! Also, I honor Ellen and Emmy Lou for their sacrifices as well. Jen and I (of course Luke) are ever so grateful to them. Thank you in advance for joining me in showing love and appreciation to this great family.

Please pray for our steadfast team -- prayer warriors, Levi's care helpers, meal providers, well wishers, etc. We thank God for you and pray that God's favor will be with you and your family.

I Love my wife for her courage and prayers. I can only imagine how Mary felt, seeing her son suffer and pay the ultimate price -- no comparison to our journey but these are life lessons I can learn from this journey. Luke's cancer is 1:million children but God's sacrifice for over 6 Billion people and counting (just a random thought!). Please keep Jen and the baby in your prayers. She's always my love and my help mate.

With love and sincere appreciation.


Tuesday, December 9, 2008

Blood Pressure Levels

Luke's BP levels were fluctuating even after the morning episode. We had requested prayer, and all of you were praying for us. Since about 5pm, it had started to steady around 90, which is great. Praise God!! Thank you CCC and Luke's friends all over the country and the world for praying for our trooper. Your prayers continue to lift Luke up and please keep them as desperate and as fervent as possible -- "then hear from heaven their prayer and their plea, and uphold their cause" 2 Chr 2:35

I'm praying that we will have an uneventful night and Luke continues to improve. Let's believe together that in the next couple of days... Luke will be off the ventilator, be able to off load over 3 liters of liquid from the body (right liquid balance), continue to have good liver functions, no viruses or flu symptoms, steady bp, and a downgrade from ICU -- Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Also, please pray for all the children here at the hospital and all around the world that are fighting for their lives. I see the stress of the fellow parents-- they are fighting a good fight with courage. Some of these children have never seen the day light. Parents have fought long and hard, and are weary tonight. Please pray that God will send comfort and strength.

Tuesday Morning

Luke has been doing well all the way until this morning, where we had a major ER type of atmosphere in the room. His blood pressure dipped and kept going down. They had to give him about 800cc of liquids and medicate him with BP enhancers. I was nervous to say the least, but as I have done in the last 4 months, I held on to God's word. He hasn't forsaken me and has always come to my rescue when I called on Him. He's my strength and ever present help. He's my fortress and my hiding place. After about an hour of the drs, nurses, and medical staff's hard work, and my cry out to God, Luke's BP went up and stabilized. At the moment, we have Dr. Fishbein and ultrasound tech going through scans of Luke's tummy to figure out what took place this morning and figure out if there was any damage to his new liver.

Please continue to keep Luke in your prayers. As you know this is a major surgery on a baby and per our PICU dr, he's progressing well but not "out of the woods" yet. We always trust in God's report but God sure trust us in our ability to lean on Him!!

In the last 4 months I've learned a lot about people and life. I'm more encouraged about people now much more than before. About life, well, God didn't lie when he said in John 16:33 "These things I have have spoken to you, that in Me you may have peace. In the world you will have tribulation, but be of good cheer, I have overcome the world." God has sent great people our way to help us get through this storm. Our daily peace comes from the relationship with God, and one thing I can tell for sure is that your prayers have made a major impact already in this journey, THANK YOU! When you go through hell, it is nice to know that heaven is hopeful with people like you. Please keep Luke in your fervent prayers - pray for
  • Luke's new liver to continue to function well
  • Stable blood pressure, pulse, CVP, etc
  • All the drs and medical staff for wisdom and direction for Luke's care
  • Daily peace and rest for Jen (and the baby!), Levi, Luke, and I
  • All our helpers - God direction and God's blessings for their sacrifices

I cannot say enough about my brother-in-law, Michael. He traded places with me giving Luke a life - when my blood and liver were ruled out. His blessing is eternal and his love is the greatest human love of all. I pray for him and thank God for the progress he has already made since the surgery. The sacrifices his wife, Ellen and their 18-month old daughter, Emmy Lou are making cannot be repaid. We are ever so grateful to them! Please keep Michael, Ellen, and Emmy Lou in your prayers. Pray for a speedy recovery and reunion.

Update: Ultrasound was reviewed by Dr. Fishbein and it seems like all the vessels are working good. Praise God! They are monitoring the BP, and trying to get the liquids out of his body slowly. He will be on the ventilator for two more days, I think. And his food will resume tomorrow through a tube. His BP is fluctuating and we need urgent prayer.



Sunday, December 7, 2008

Sunday Update

Last night I went to the hospital to see Lukey and Michael. Lukey is doing good. The liver function is good and they were just trying to get his blood pressure stabilized. He woke up while I was there and put his arm up on his forehead. They quickly gave him more sedation so he won't move around. He looks much better, just a little puffy. He is retaining a lot of fluid. Because he has so much fluid around his lungs, they don't want to try to take him off the ventilator. They want to wait until he gets rid of some of the excess.
Michael was not feeling so great last night. He was having a lot of pain in his stomach. The Dr. said that they used retractors to hold his stomach muscles open during surgery so it is not surprising that he is having painful spasms in his stomach muscles. They tried to get him to swallow a little ginger ale and his muscles all started spasming. I felt very badly that there is nothing I can do for him. The good news is they moved him out of the ICU last night and into a room in another building. The woman who was next to him in the ICU was a serious problem. Not to be mean, because I am sure she was suffering, but she was never quiet. He wanted out of there so badly. Now he is sharing a room with another liver donor. I am about to head out to Georgetown to visit everyone for awhile. My mom flies in tomorrow evening..thank God! I'm sure Michael will feel much relief when she gets here.
I will continue to keep you posted their progress. Thank you for all your prayers.

Saturday, December 6, 2008

Latest Update

I just spoke with Ben and he gave me the update. What the surgeon thinks happened is that the liver was settling into position, and during that process one of the vessels formed a clot in it. The blood flow had actually started to improve before he went for surgery, but Dr. Fishbein wanted to be absolutely sure about it so they went ahead with the surgery. He was in for about two hours and it looks like everything is going well now. They will do another blood test in about an hour which gives them some information they need. Dr. Fishbein said the liver has really settled in now, so they could see how everything is working in that position.
Ben told me that Luke woke up this morning and looked at him. He said he lifted his arm up, and then started to try to pull out the tubes and things. They had to sedate him again. My baby just wants to wake up and be unhooked. I got a status report on Michael too. He is having a lot of dizziness so they are going to try a different medicine to get it under control. Ben sounded very tired on the phone. He will call me when they have the results of the blood tests. Levi is really missing his daddy, so I think we will drive out to Georgetown this evening and drop off some food and my brother was wanting his phone and Ipod. Thank you for all your prayers. We appreciate them so much.

Transplant Update

Sorry I didn't get a chance to update last night. I had a very hard time last night after seeing Lukey. When we were finally able to see him, I just burst into tears. The ICU is a very busy and stressful place to be in...and loud. When we went into the room there were nurses and a doctor and respiratory therapists in there. So many machines...all beeping and alarms going off and my little baby just laying there hooked up to so much stuff. I could not handle it. I thought I was going to pass out. Just thinking about it right now makes my heart start to race. I had to sit down and try to breathe better. Needless to say, I came home last night. I was going to go rest at the Ronald McDonald House, but Ben said I should just go rest at home with Levi and he would stay with Lukey and call me if there was anything. I felt like a deserter. I had gone down to see my brother and he was in a lot of pain and feeling very nauseous. I felt so out of control and helpless, I just could not handle it. The Dr. said that everything was going well. The first few hours after a transplant they have to watch very closely and try to balance the fluids in his body and watch what is coming out of the liver to make sure there is no bleeding. I have been fighting a nasty cold paired with evening nausea and too much stress. I came home and slept. This morning Ben called and said that they have to take Lukey back to surgery. One of the vessels isn't allowing blood flow, so they have to go back in and see why that is happening and fix it. It's not rare for this to happen I guess, they said it is common. I just spoke with my brother on the phone and he is feeling better than yesterday. That gave me some relief. Let's just take Lukey to the Lord in prayer and pray that the vessels will all work and allow blood flow. Let's pray for his body to accept the liver and for a quick recovery. Pray for a quick recovery for Michael. Pray for Ben and John and Dileep who are constantly posted at the hospital watching and waiting. And please pray that God gives me strength to get through this. I need to be strong for my baby. I'll update after I know more about Lukey's surgery today.

Friday, December 5, 2008

Out of Surgery

Lukey is out of surgery. The surgeon came out and spoke to us about the surgery. He thought that it went very well. He said it was the best decision to do the transplant because the tumor was a really bad one. It had spread to the vena cava, so part of that had to be removed. Dr. Fishbein said he got really good margins and that he tested the lymph nodes for cancer cells..there were none. He said they got all the cancer. Due to some creativity in attaching the new liver, Lukey will have to remain sedated on the ventilator for at least two days. They don't want the liver moving around. Once it has had a chance to adhere and other organs have come in around it they will take him off the ventilator and slowly start waking him up. We have not seen Michael or Lukey yet. We are still waiting. They are both in their rooms, but still getting situated with the machines and hook-ups. I will update later on tonite in more detail. We thank you for all your prayers and encouraging words. Lukey is cancer free and we Praise God for it!! Love to you all.

Surgery Update 2:50pm

The surgeon just came out and said that Michael is done. They are just closing him up now. He said they got the liver out and it was a very healthy looking piece of liver. He will going up to the ICU where they will take the breathing tube out and I can see him in about an hour. The Dr. said that they had just started putting the liver in Luke and it would be about three more hours for Luke. The patient advocate then came out and said she had just peeked in on Luke in surgery and everything was going well. I will continue to update as I know more. Thank you all for your prayers. I feel more at peace than I normally would in this situation.

Surgery Update

Both Lukey and Michael are currently in surgery. Lukey went in at 8:45 am for a little exploratory look first. We sat with Michael until his part was a go. Michael went in at 10:30. The last update that I received was that Lukey was kinda in a holding pattern until they got the liver portion out of Michael. They had just started on Michael, so we are just waiting. She said that vital signs on both of them were good. I cried when they took Lukey from us. I just said a prayer, Lord I put him entirely in your hands. We then went and sat with Michael. Our good friend Dileep had been sitting with him all morning and keeping him company. That truly meant a lot to me. I will continue to update this as we receive more information. Please keep Lukey and Michael in your prayers today.

Wednesday, December 3, 2008

Urgent Update

We will be admitted into Georgetown hospital tomorrow morning at 11:00 am. Michael and Lukey will go into surgery Friday morning between 7-8 am. We request urgent prayer for both Lukey and Michael as they go into surgery. We pray for a quick recovery and no complications. I also ask for prayer for Ben and I. We need strength to get through this time. I know I should not be afraid, but as a mom and a sister I am very nervous about this. We appreciate your prayers. Will keep you in touch.

Life Update

I hope everyone had a fabulous Thanksgiving. We have a lot to be thankful for. I say any Thanksgiving where I don't have to cook, is a good one. Our good friends John and Gilian surprised us with an entire turkey dinner for lunch. All we had to do was heat and eat. Never had it so easy. Then at 5pm my brother flew in to Dulles and at 6pm we had another dinner at a friends house in Maryland. It was a full day...in more ways than one. I love the mashed potatoes and rolls with green olives stuck inside! Yeah...that's not a pregnancy thing...I've always loved it. John and Gilian trying to carve the turkey.

The day after Thanksgiving we got our Christmas tree. I was sad that I did not get to go and be a part of picking out the tree this year, but it was way too cold for Lukey. Ben and Levi and my brother went and cut down the tree. They picked the perfect tree. Levi decorated it with all the shatterproof ornaments he could get his hands on. You can imagine how "lovely" it is! Levi say's it's the best tree in the whole world and that is enough for me. Gone are the days of making my Christmas tree a matching theme or even just pretty. For the next 10-15 years it's all about the boys and hopefully the little girl baby growing in my belly.

Speaking of babies. I finally had an ultrasound to see how far along I am. I am 12 weeks. This has to be a girl. Levi believes it is. He wants to name her Lily Lou. I said Lily, yes but Lily Lou sounds strange. I got to hear the heartbeat and see "her" moving all around. It is always an awe inspiring sight to see them on ultrasound.

Last weekend we took my brother to DC to see the sights. It was pretty cold and kind of a rushed tour because I forgot to bring a bottle. He got to see most everything. The White House, the Capitol, Washington Monument, Lincoln Memorial, and the Vietnam Memorial.

Levi looking quite cold.

I love this hat! He looks like Elmer Fudd.

Michael at the monument.

So now Michael has finished all of his tests and we can go into the hospital as early as Friday for the surgery. We got a call after Thanksgiving that they had two livers and they were 75% sure we would get one. Well we didn't. I wish they wouldn't call unless they were sure we were going to get a liver. It's going to be a long road yet. I will try to keep the updates coming. Lukey will be in the ICU for a few days, so I might be a little slow at first with the updates. You never know. I really hope to be home for Christmas. Love to you all, I need to go take care of a very fussy little guy.