Saturday, September 10, 2011
A lot has happened since our last blog. Where to begin? Abby was finally placed on the Active transplant list in July. We had our bags packed and where ready to hop, skip and jump on a plane to California for her Kidney. I got a call but not the exact call I thought, since we live in Texas and the transplant center is in (Stanford) Palo Alto, Calif. Abby had been offered a kidney twice but since we couldn't get to the transplant center within two hours she was sadly passed up. The transplant coordinator suggested that we come stay closer to wait for Abby's transplant, being that my in laws live only one and half hours away, we decided coming closer would be the best.
Everyday we weren't in California, was a day she could get kidney that we were missing out on. We packed our stuff and headed on a road trip out of the Texas heat to sunny California. God made a way for everything to fall into place perfectly. The drive to Northern Calif is 33 hours, after stopping for night, we headed on the road again. All excited in the back seat Abby was reading the bible to us ( me and Memo) and just so happy. We were going through Phoenix, and a truck in front of us ran over a diesel tire and the tire hit the front end of our bumper going under our car. We pull off the FWY to make sure the car was OK and sure enough the radiator was spilling out tons of fluid. In a panic me and husband are trying to figure out what to do, we are in a city we don't know, and don't have any relatives close. Abby tells us "God allowed this to happen for reason, we may not know why but we have to trust Him, what if the tire would of hit the window we wouldn't be here right now." Hearing the words of my ten year old daughter, we pulled ourselves together and put our heads together and got the car to the local dealership. The dealership was so helpful once we explained why we were traveling to Calif. They weren't sure if they would have all the parts and it being Friday, if we didn't get the car fixed that day it wouldn't be till Monday. Everything came together and five hours later we were back on the road again with a new radiator, condenser and fan on our car.
We got to Stockton on Sunday, then sent Memo back to Texas on Tuesday and began our wait for the call. Saturday night Sept 3, Abby and I were getting our clothes ready for church on Sunday. My phone rings and the caller ID says Stanford, so me and Abby got excited, and it was Gerri our transplant coordinator. She said Abby has a offer on a kidney from a 18 yr. old young man. She told me to head to the hospital and know that Abby's blood still had to be tested to match and the donors kidney had to examined by the surgeon. We told everyone to start praying! My father in law drove us to the hospital. A one hour and half drive never seem so fast. Abby had been calling all her Aunts and friends to tell them we were headed to the hospital. She was excited! Then the question came up in the drive. "Mom is donor a living donor?" I had to explain about the donor being deceased. Abby got real sad and told me crying "Mom, I feel so bad that someone had to die for me to get a kidney, how would I thank her?" I explained it was her time and Abby could write a letter to the families to thank them. At that point the rest of ride Abby was quite thinking of what to write the family of her kidney Donors family. Before we got to the hospital we found out there was no issues with the blood of Abby and the donor. We arrived about 11:45 pm and got registered and Abby was schedule for surgery at 8:00 am. Filled with too much excitement Abby couldn't sleep finally around 4:00 am she fall a sleep. I sat in the chair next to her tired but too excited to sleep, just thanking and praising God for this miracle. My poor father in law slept in chair in the hall. While back in Texas Memo was finding the first flight over here. My sister and brother in law were driving up from southern Calif to be here when Abby got her kidney.
All docs came to talk to us, I signed consent forms and finally the anesthesiologist team came up to get Abby. Her and her tiger ( stuffed animal who has been in evry surgery with her) were wheeled downstairs, she was smiling to whole way down. It was time to say goodbye, by this time they gave her the goofy medicine and Abby was smiling ear to ear. I gave her a kiss goodbye and as she was being rolled away for surgery she kept turning her head saying "Bye Mom I love you". The nurse directed me to the waiting room. I was the only person in the waiting room for about 45 mins, my sister and brother in law came to wait with me. shortly after Memo's plane arrived and him and my father in law finally arrived mid surgery. The Nurse came out about 11:00 am and said they one more hour left. The new Kidney was pumpig and all was left was to connect it to her bladder. He also said we would be happy with the new kidney. Two hours later the surgeon came out and told how well Abby did, and how well the kidney was working, the only problem was her bladder was very small from her having her kidneys removed, it shrink from not being used. He explained it would get bigger and it was normal after nephrectomy for a bladder to get small. He was happy with the outcome and we could see her in fifteen minutes.
After 30 mins of waiting they let us in ICU to see Abby. the Dr. was in her room and told us she had being talking and told them she was in pain and not to call her Abigail but Abby. She had a tube in her belly that numbed the area of her incision, another tube to drain the incision site of blood and a Foley Cather for urine output. Her dialysis Cather was still in place, along with IVs everywhere. She had eight IVS going of anti-rejection medications, antibiotics and pain med. Abby's creatinine (blood test that detects kidney function)before transplant was 13 (normal is .6 to 1.2), after transplant it was 6, that night was 3 by the next morning it was .6. perfectly normal kidney function. Tell me that isn't a miracle. Abby had a lot of family support with her all our families from Calif were here spending time with her and celebrating her Miracle! Abby named her kidney Miracle and the name is so fitting.
The first two nights were rough on Abby, she had bladder spasms. Since her bladder hadn't been used in so long it was spasming now that it was getting full and working. Imagine the pain of a leg spasm but in your bladder, it was horrible pain. Sometimes it would take the meds hours to work. One night Memo didn't sleep he sat in the chair next to her till 5am. When you have a kidney transplant you especially when a child gets a adult kidney, you have to give that kidney a lot of fluid to pump through it to keep it working. Abby got pumped with too much fluid, and when fluid has no where else to go it goes to your lungs. one her her lungs looked wet in a xray so they increased some meds of Abby and got all the fluid off her. By the end of the day the fluid was gone from her Lung. She was taken out of ICU and went upstairs to a regular room.
Abby did really good in a regular room. I started training with the transplant nurse on all her meds and how to take care of her. They are super great with training and explaining everything to us. We were involved with all the doctors rounds they did on Abby and we were able to put our input as well. Post transplant day 4 Abby's old dialysis Cather was being removed under general anesthesia and a PICC line placed for lab draws and IV infusions. Abby had been asking and asking if she could keep her Cather. The surgeon weren't sure if they could give it to her but the surgeon nurse told her he would give it to her, she sure got her cather. Abby has been doing great, so good she was able to be discharged the fifth day after her transplant. She got all the tubes and IVs removed finally and now just has her PICC line that will be in just for a few weeks. We are now staying at hotel for a few days till a room opens up at the Ronald MC Donald House. The transplant Nurse thinks we only need to be here eight weeks instead of twelve. Abby transplant has been a success, she still has some unbalances in her labs and requires IV infusion but that is normal and to be expected. My Abby never seems to amaze me by her strength! Can't believe she finally got her kidney. I remember my first blog was when she was in ICU on a Ventilator and all I could do was pray for a miracle to happen, and her miracle has happened! she still is the same fighter that got herself off that ventilator to her transplant Sept 4, 2011 at 8:30 am.
To everyone that has prayed and supported her thank you so much,it means so much to us! God works miracles everyday, I know He has heard everyone prayer and that is why she is here today! like Abby said God allows things to happen for a reason, I know there has not been just one reason but many reasons, that we have been on this journey, God has held us the whole way through, He has been there in the midst of our darkest hour and has met us at the point of every need, most of all He has shown Himself Faithful time and time again! Thank You God!
I would to Thank the family of Bryan M Zamudio who made the unselfish decision to donate his organs as he passed away. May Bryan M Zamudio Rest in Peace 2/9/93-9/2/11, Bryan I never met you but you are my hero! You gave my Abby a second chance at life.
As you know every blog I end with a quote, today's quote very special. My husband found it written down by his little sister Adriana who passed away during Abby's journey, I think it is so fitting for today's blog
Monday, January 31, 2011
We have so many things going on right now that its only the grace of God that gets us through each and everyday. Our lives have changed so much the last year, and all we can do is take step by step, moment by moment and sometimes second by second. As far, as Transplant goes we are getting closer but we are not quite there yet. She still remains on the transplant list as inactive as potential donors are getting tested and the transplant doctors and Abby doctors here in TX are communicating back and fourth. There is two more things to be decided before she is considered Active and not Inactive.
Decision one has been heavy one my heart. You see Abby's blood pressure is controlled with three very strong blood pressure medications and while it is under control the transplant doctors feel that is too many medications needed to control her blood pressure. Which can be dangerous for transplant, so the way to fix this is to have her kidneys removed before her transplant. I know it sounds crazy right. To help you understand the medical logic behind it: If someone blood pressure ever gets low your kidneys will produce a hormone to elevate your blood pressure and since Abby's kidneys do not work they just constantly are sending out those hormones even though her body doesn't need it causing high blood pressure, so the logic is remove the kidneys remove the problems. Which either way one of her kidneys was going to be removed during transplant, and it is probably for the best, but as a mom it was just very scary and upsetting that she may need them removed before she is active on the transplant list. I wish she didn't have to go through any of this but all we can do is pray and ask God to guide the doctors as they go back and fourth to make the right decision and do whats best for Abby, even if its not what I want, all that matters is whats best for her and whats going to make her better so she doesn't have go through all this. Of course Abby is totally aware of whats going on and it doesn't even phase her.
Next Decision has to do with other medications she is on, weather to ween her off or leave her on, If she stays on them then in three months she can be ready for transplant and if she gets weened off it will six months until she is ready and once again its the doctors going back and fourth to decide whats best for Abby. Everything will come together and be the best for Abby, we just need to be patient and wait!
The good news is the potential donor has been through three test and they are all going good, so many people who want to be tested to be a kidney donor for Abby and some have not even meet Abby in person, people kindness has touched our family life. People have helped by stepping up to fund raise for her transplant expenses and that has touched our family too. People support and Prayers give us strength!
Through all this craziness we have learned to be patient and trust God to see us through every circumstance! Someone said wow you guys cant seem to catch a break, but with a strong lil girl like Abby who can compliant but chooses not too, gives us all the reason to keep going and fight this fight with her and for her. Children are a gift from God and He has chosen me to be her mom and I am so grateful for that. We may have had a rough year, but it has also been one of victories and a reminder of GOD faithfulness to our family over and over again! He has held each and every step. We may not know what the Future holds but we know the ONE who holds the future!
Until next time Keep Abby in your prayers and I hope as her journey continues she touches your life as much as she touches mine!
PS- the picture for this blog is from Abby's last chemothearpy appt, I love it so much.....
Thursday, December 9, 2010
I would like to take a opportunity to ask you to become a registered organ donor, over 109,000 people are awaiting organ transplants, and when you think about it, people die every second of everyday, if everyone was a organ donor, people wouldn't have to wait years and years for a life changing transplant, so I want to encourage to sign up on http://www.donatelife.net/ , they have a lot facts on the misconceptions of being a organ donor!
Thursday, October 7, 2010
Hello Everyone, I know it has been a while since my last post, but I was waiting to get all the details of Abby's transplant. As you know Abby finally got cleared for a transplant. We did find out that our insurance is NOT in network with any transplant centers in Texas, even after much effort from Cook's Children's Hospital our insurance would not agree to a single case acceptance either. We were left with a very tough decision, which state will we travel to have Abby's transplant. This was the hardest decision to make in life so far, after much prayer and sleepless nights, we chose the Lucille Packard Hospital and transplant center for kids in Palo Alto, California. LPH has a very high success rate for transplant and it is a children's hospital which are very important to us, and of course us having family in California too, none super close but at least driving distance away.
Abby goes in November to LPH to get her medical evaluation, see even though her kidney doctor has cleared her for a transplant the actual transplant center has to declare her healthy enough as well. Once we go in November and she is accepted to be a transplant patient, then we can have people tested to be a donor. There is a criteria for being a donor and out of everyone in our families there is one person who fits that criteria who wants to remain anonymous for now. They will be tested to see if they can be her donor, if for whatever reason they are not compatible then Abby will be on a transplant list. We will have to be ready at the drop of a hat to jump on a plane to California, and be preapared to stay in california for three months after her trasnplant.
We will do whatever it takes to get Abby her transplant, if that means to go across the world to do it then so be it! All the nurses we have talked have told us how a transplant is a miracle it itself, that as soon as that kidney is placed everything changes back to normal in a instant! Miracles come in different forms and I know her miracle is on it's way.. God will use the hands of doctors to make her whole again! She will be free to be a kid again, to play sports, to be in gymnastics and life will no longer be on lock down by 7:00 pm to put her on dialysis. All my blogs of Abby gave you a picture of her journey and the rough road she has had to walk, a walk many of us could not endure, a walk of much suffering and much hardship but through it all she has held her head high and taught me the meaning of life! Her daddy and I have moments of reflection and all she has endure and we weep because we can't believe how she has overcome, so many obstacles that she has faced. I've never shared this before but I remember one day the ICU doctor said we need to act fast before we are chasing bad spirits away another wards chasing death away, that's how hard Abby had it, but to see her now is evidence she is my walking miracle!
So keep Abby's transplant in your prayers, pray the potential donor will be a match, and she will not have to go on a list and her transplant will be a success!
A lot of the traveling expenses and our 3 month post transplant stay will be out of pocket for our family, so if you would like to help out in anyway, please do so here on her blog... thank you so much for your support!
PS- walk with Abby Shirts are in the making so let us know if you would to order one...
Tuesday, August 31, 2010
It has been a while since we have posted any new updates on Abby. She is doing fabulous. She had a good summer and now is back in school, working hard in 4th grade. Her health is so much better than before.
Just to recap you on whats going on. Abby has a auto immune diease that caused her kidney failure, it is called microscopic polyangitsis MPA ( I know a big word). MPA is where your immunne system turns on your body and hers attacked and destroyed her kidneys. We have been waiting for this MPA to be supperessed so she can be able to get a transplant. We went to the doctor that specializes in Auto Immune dieases last week, and this is our second time going there. This appt. we saw the main doctor, she was very good and educated us a little more on this MPA. Abby has been having chemotherapy treatments once a month to help this MPA go into remission. The MPA has to be in remission so she can recieve a transplant, if it is not ther is a risk of the new kidney being destroyed. The Auto Immune doctor had to decide if Abby needed anymore chemotherapy. If she needed more Chemotherapy than the transplant would need to go the back burner, if she didnt need anymore Chemotherapy then we could get clearance for a transplant. The Doctor explained to me that we need to be patient and severity of the MPA. She also said she needed more test to be done before she could make her decision. When we left that appt. I explained to Abby there was a possblity she would have to do more chemotherapy and her transplant would have to wait. She told me Mom either way I'll be okay! At that point, those where words I needed I hear because the doctor placed worry in me. We prayed alot the next few days and we Just wanted the best for Abby. Finally five days later the doctor's nurse called back and said she did not need anymore Chemotherapy which means she is good for the transplant! Praisie GOD!
We go back to the kidney doctor in two weeks to see what the next steps are for Abby transplant. I will keep you posted! We have come a long way thus far...
Since my last post, Abby has recieved a letter back from President Obama, which made her so happy.
Keep her in your prayers!
Tuesday, June 22, 2010
Abby has been doing fabulos! She recently went to camp and had a blast. at her most recent doctors appt, besides her kidney function all her other labs were normal again... which is Awesome! Today is her monthly Chemotherapy here at Cooks Children, which is a 12 hour process from checking to geting the medicine to being discharged, only 6 hours of it is the actual Chemotherpy. We make the most of the time here and enjoy talking with all the nurses and staff.
When we arrived in our room this afternoon thier was a special anonymous note waiting for us. It really touched our hearts and brought conformation and a faith injection into our lives. I would like to share with you.
Abigail and Family,
Throughout Jesus ministry and all throughout the bible, Jesus tells the people that your faith has healded you. In previous admissions, I've seen your family's faith in the Lord, and I am here to tell you not to give up! Your faith, Abigail has healded you. The Lord has given you us all power and authority to rebuke the devourer and his schemes. Jesus says that we, as born again believers in Him that we will do even greater things than these referring to the miraculous works of Jesus ministrybecause the same power that conquered His grave lives in You! So Abigail Ornelas, by power of Pwer of Jesus Christ in you, your Faith has Healed you!
The reason I am writing all of us this is because I don't want you or family to lose even the slightese bit of hope or faith in the Lord's healing power. In fact I want to encourage you in the Faith. A week or so ago after your last big discharge from the hospital, I was just thinking about you and your family and I feel like I heard the voice of the Lord saying that you will defy the odds of what the doctors say because Jesus is healing you completly! you will not need a transplant, you won't have to be on medications the rest of your life,you WILL be restored to FULL health! He says to ask anything in HIS (Jesus) name and it WILL be done. So Lord Jesus, I ask for your complete Healing to overwhelm Abigail. I ask that all attacks on Abigail phyiscal, mental, spiritual and emotional being be gone in the name of Jesus. let Abigail be a testimony of your incredible grace and mercy. Amen!