Tuesday, December 30, 2008
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
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.
Thursday, December 25, 2008
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)
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
Lukey after he pulled out his ng tube. He looks like his old self.
A happy Lukey. I love how they let him wear his own clothes instead of a hospital gown.
Sunday, December 21, 2008
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
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
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
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
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
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
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 CAN'T EVEN WALK
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
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
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.
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
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.
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
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
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.
Friday, December 5, 2008
Wednesday, December 3, 2008
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.