Organized by: Crista Makdouli
Taken suddenly ill, sweet baby James is hospitalized in critical condition with a rare blood disorder. Help this beautiful family with your prayers and financial support.
Update: 8/31: James has been back in the hospital for almost two weeks after being able to spend some time at home. Mary is with him and Tim has been back and forth between home with the other children, and then Burlington with James and Mary. He will be going back to work soon too. As any one of our families would be under huge financial stress in a time like this, we are increasing the goal of this fundraiser to be able to extend the support that is brought in with intention. Give freely to this sweet family that has gone through so much. It is truly appreciated.
UPDATE Friday 7/31 afternoon:
James has been improving little by little all week and today the doctors have officially approved his DISCHARGE!!! James is headed home finally:)!! Please continue to pray for him and the family as he continues to heal and they adjust back to home:). Many thanks to everyone for your prayers, love and support from the Lapka Family!!!
UPDATE Friday, 7/24 afternoon:
James is still improving everyday. The doctors and nurses are somewhat in shock at how well he is doing for how sick he was and are extremely happy. His blood shows that his levels for kidney function are still high but the levels do improve with each day. He no longer is needing dialysis because his kidneys are working enough to do the job. Today is the last ween for his sedation medications and we should hopefully see a more contented baby with smiles! His blood pressure is still higher than normal but not high enough to put him on medicine. He may have to be on blood pressure medication later if it doesn't come down to normal. The doctor said this most likely will happen. We may even move up to the pediatric floor from PICU tomorrow! This is the next step to improvement. They inserted a NG tube to get liquid food into his belly because he was not taking enough in orally. We are still uncertain as to when James will be discharged. God is good and has answered many prayers from you all. We are so very grateful!
UPDATE Monday, 7/20/15 evening:
Greetings family and friends!
James is doing better everyday! This is day 3 without dialysis which tells us his body is starting to be able to heal itself. Ecoli is gone, his kidneys have woken up to some extent....and keep waking up it seems. He is still being weened from his sedation medications which is sad to watch him go through. But it is also a good thing because it means he will be himself again soon! He is still hanging out in the PICU where the nurses cannot get enough of him. I stepped out for a few minutes to get some fresh air only to come back and find 3 nurses in there taking a number to snuggle him and give him a bottle. He is drinking from a bottle and doing very well with it. His gut is trying to adjust to getting something other then that which was given thru his IV. Each day we are thankful to you all for all of your prayers, thoughts and deeds because without them James would not be where he is today. Our family thanks you all and will never forget such generosity....God Bless,
Tim, Mary, Luciana, Peter, Gemma, Mariella, Antoinette, John and James
UPDATE (Sunday, 7/19/15 evening):
So, big big news today! And in reflecting on the last 4 days I think of the HUGE step of using heliox as a carrier gas to get oxygen into James's lungs! He has leapt from improvement to amazing improvement since then..
Saturday we were able to take off the heart rythem monitor wires, take off the continuous blood pressure cuff, and play with mama and papa for 4 hrs. He wanted to be held in the upright position for the first time in 2.5 weeks. Today we took away the air support completely! He responded by smiles and talking. That leaves only the Fentanyl and midazolan as drugs, and then his drips for food....5 banks of tubes total. He drank breast milk for 1st time at 1100 am today. James is showing his desire to move on by deciding on his own terms....to pull out his NG tube which ran from his nose to his tummy relieving gases and allowing us to test and know how the stomach is reacting to life. Even after over 40 years of intensive eperience in peadatrics Dr heath is smiling and shaking his head saying as he always has here...."it's up to you James, I can't believe it!"
God has hand picked these amazing people from all men to heal and protect His little children, and they are doing a great job! We know that thru all of your prayers, sacrifices, and words of encouragemet we have hung on for this ride.....we are not done yet, we are still very uncertain as to the extent of damage and future comeback of the kydnies, but I, for one am certain that with continued use and rest of the kydnies over time will show a miracle....100% recovery!
And just so you know, James has said he wishes to thank you himself in the days ahead....he's resting in the sleep that shows recovery for now!
UPDATE (Friday, 7/17/15 evening):
The light fades with the sun and blends into a quite vigorous routine that knows neither day nor night
If my little eyes are not too puffy and I'm laying with my head tilted just right I can see out into the beautiful world. A world in which walk some incredible people!
Some of them still come and go into my room each day, while others are watching and waiting, and praying from all US timezones, Canada, France, England , and many other countries...that I may in God's time, rise up from my crib, find myself 120 miles or so to the east of here where the grass is green, the apples grow, and the creek rustles in its timeless whisper with constant and endless energy to reach the northern Atlantic ocean. I feel that that is the energy and persistence I will need to overcome and win this wrestle with the tiny little feller known as ecoli 0157 h7. So tiny it would fit many, many times into just one of the tears that have rolled down my cheek to be lifted off with love by mama or papa or one of the wonderful nurses that I have been given the pleasure to meet.
We are entering week 3 which is daunting, unbelievable, and very real all at once! I have been breathing without the ventilator and tube leading directly into my lungs for 48 hrs now! I was able to do this because a hero of all pediatric work, Dr. Heath sent air to my lungs with a carrier gas, helium for the 18 hrs I wasn't strong enough to get it in myself. If my labs are favourable in the morning, the crews will not have to wear gloves and gowns each time they attend to me! Please pray this night for that! As you all run about your nights and days and are troubled or annoyed at times by a child's wet bed, a diaper, or bad timing in your busy schedule.........be thankful your loved ones and yourselves are able to go pee! I am struggling to make any and upon that determines a big part of my future. I am thankful for each improvement no matter how small each day, I am so happy that someone I'll never know gave me the blood that fills my heart and veins which is allowing me to see yet another day!
I'll finish tonight by saying I am so thankful to have such a large and widespread family because that is how it is now!
UPDATE (Wednesday, 7/15/15 evening from Mary Lapka):
James was taken off of the ventilator this afternoon after his dialysis run. They are still monitoring him to see if they need to put him back on the ventilator . This is not a step backwards by any means. Again, this is a situation with many peaks and valley's. He is working hard to maintain stability. Today is James first birthday! God has given us many blessings. While James still fights to keep the ventilator out, he reaches out for our touch, smiles, and tries to talk to us in his own little language. This is a big improvement! Grandmom and Grandpop sent him a balloon which he loved to touch and hold. We hope and pray that he will be strong enough to keep the ventilator out. The next hour or so will tell. May God Bless you all!
Love and Prayers,
The Lapka Family
Update on James's Kidneys from Mary: Kidneys are definitely damaged, but working just a little bit but not enough. The extent of the damage we will not know for some time. We have to wait and see what they are going to do. Its a waiting game. He is producing urine but it is not the quality it needs to be which indicates that his kidneys are not working very much.
UPDATE (Tuesday, 7/14/15 evening from Mary Lapka):
James is showing signs that his kidneys are starting to wake up a little bit! We still will not know to what extent his kidneys were damaged. Only time will tell. He is still on the ventilator and being sedated. The doctors are hoping to get him off the ventilator in the next couple of days but his kidneys have to wake up a little bit more for this to happen. We are invoking the intercession of St. Benedict because he is the patron Saint of kidneys! Thank you again for all the prayers and support you have given. It has helped to lighten the load! May God reward your generosity abundantly! We will keep sending updates on James.
UPDATE (Sunday 7/12/15 evening from Tim Lapka):
Many things have transpired since the last update. The many peaks and valley's are definitely being experienced through this sickness. James is still in criatical- stable condition while still making little improvements here and there. His breathing tube was removed on Friday only to find out that it was too much work for him to breathe on his own. Mary was able to hold him for the first time in 7 days. What a joy and blessing! The tube and ventilator had to be put back in that night and he is able to rest so his body can prepare for the next round. He is still undergoing daily dialysis which he is responding well to. His little heart still races when he thinks of all of you.
And we have to pinch ourselves daily to be sure we are here. The last few days have blended into one big one, but has evened out today. We look forward to talking soon.
You all have been very kind and our family is forever grateful. The journey continues!
UPDATE (Thursday 7/9/15 evening from Tim Lapka):
Greetings from Burlington! James is humbled and proud to have so many friends spread across the entire USA! Your prayers and kindness are matched in some ways by the events of today....here are some of them he wished to share:
All of you who wish you could be here to hold me.....I feel your love in the gentle hands and warm embraces of each of the doctors, nurses, therapists, and techs (about 7-10 of them) rotating every 12 hrs. How else could my heart race up to 190 beats per minute at times if it wasn't receiving that great force of love? I have been gifted with your strong lungs and was able to breathe on my own all day except for a few minutes near the end of dialysis, when I was very close to your heart while mine was being cleansed. When there is weight and worry on your chest, march forward. If I do, the tube and ventilator will be able to rest easy at the side of my crib....and not on my chest anymore, perhaps by tomorrow evening! And as you pace back and forth while working, helping others, preparing meals, or playing and you notice your feet may be sore, tired, or swollen and you think of me... I thank you for mine are finally warm, unswollen, and!! yes I do have ankles! So, thank you very much with all my heart for every act of kindness.....you have helped save my life and I will never forget you. I'm glad you thought of me! May everyone know that your wishes are very close to me as I carry this cross. We are not done yet! - James
UPDATE (Wednesday 7/8/15 @ 4:30pm from Mary Lapka):
"James had a good night again and a good day today. His blood work is looking better- the HUS seems to be backing down a little. He did get more blood today with dialysis but has been off the blood pressure medications since yesterday evening. He was very feisty this morning showing signs he's ok with Burlington, but would like very much to be back in North Lawrence! There is a chance that they may try to wean him off of the ventilator in the next few days. Again we thank everyone for the thoughts and prayers. We are so thankful.
Aunt Becca,who is also Godmother to James, came to be with us and to meet James for the first time:). We ar blessed to have her with us! (Photo posted)
UPDATE (Tuesday, 7/7/15 @7:30pm from Mary Lapka): James had a good day today. There were some little improvements. The dialysis treatment went well this morning. He is still in a "critical-stable" condition. He is surrounded by a very good team of doctors and nurses who are giving him excellent care and loving him to pieces! Please be assured of our gratitude and prayers.
May God Bless You,
Tim, Mary and Children
UPDATE (Monday, 7/6/15 @9:30pm from Mary Lapka): James has been diagnosed with an ecoli infection which has also triggered a disease called HUS. This is a disease that attacks the red blood cells which leads to other complications affecting the organs. There is no other treatment than to help support the bodys natural abilities to fight the diease. James is very sick but stable. He is undergoing dialysis everyday because his kidneys have been damaged. We thank everyone for all the prayers and support offered for James recovery. This is a slow process with it's many peaks and valleys.