Owen is tired. Owen is cranky. Owen is not himself. We have some big decisions to make and I don't know how to make them.I got a call from the cardiologist at UCLA today. She had called Pittsburg and Seattle Children's and gave them info about Owen and his antibodies. She recommends both of these hospitals but says that UCLA can also take him on with confidence. When I asked about Stanford, she said they have sent some of their high risk kiddos to UCLA. Now I'm really confused. I asked her "if it were your son where would you go?" She said to go wherever is geographically going to be best (family, friends, support). That option is out because our whole life is in Phoenix. She then said as a parent, you have to go with your gut. Any major center is going to be great and do the best they can for Owen.
I realize that time is running out and a decision needs to be made soon. Dr. Halnon (at ucla) said that if we wanted to go somewhere else, she would do anything and everything to get his records there and help facillitate that. Pretty amazing I think.
Dr. Stock just called and is concerned. He doesn't like that Owen is not feeling right. He wants to see him at 9am tomorrow and to also keep his appointment for this Wed. I couldn't ask for a more caring cardiologist.
A decision has to be made soon. How do I choose a hospital? How do I know where to send my baby to get a new heart? I keep praying for an answer, but it hasn't come. I keep hearing, "you'll have a gut feeling, you'll know", yet I dont know. The one thing I do know is that moving forward with transplant is the right option. I have a good feeling that things will work out and I will trust that. Where to go is the one major decision that has left me sleepless, tearful and begging for guidance.
25 comments:
I'm so sorry. I wish I could say anything to make you feel better. I will just pray for you to feel some peace about a decision. I will also pray that Owen feels better. I don't know how you do it, but you do, and you inspire the rest of us.
I know this must be so tough. I think once you just decide on a center- then you will feel its right in your gut. Kinda backwards, but that's how it was for me. On the bright side you're right, Stock is pretty great, so at least you are in good hands here when you get back from wherever!
We'll be thinking of Owen!
You may have already mentioned this but does your cardiologist recommend one over the other? We will keep praying that you make a decision that you feel confident about. Hugs to you and your family!
Many Blessings,
Amanda
That is really hard. My
sister-in-law and I were discussing what we would do if we had another heart baby (hypoplastic or such!) and I talked to her about whether we would just enjoy the little time, if we would go the same route again, or maybe go to Boston (I do have family there). I just do not know. It is such a hard choice, and we are not even in that situation right now. We are praying for you, and I know you will make a great choice for sweet Owen.
Sometimes the answer doesn't come in a way we think. Maybe you have to just choose one and it will just be the right one. You'll make the right choice. Keep praying for it. Not easy i'm sure, but it sounds like with all your choices you'll have a great facility to work with.
We're praying for you to be lead by Our Father & for Owen to feel better!
SW WI MOMMY
I am so sorry your family is having to go through this. I will be praying for you and the decision you make for Owen.
Andrea,
I am so sorry. I wish that I could do something for you. I will pray that you will be guided and be able to recognize what you are feeling. Are you leaning in any direction? If you need anything please let me know and I will get you my phone number and email. I wish I could help more. Hang in there little Owen!
Oh Andrea, I SO wish I could be any help to you. Pick a hospital, pray specifically about that hospital and then see how you feel. If you still feel yucky pray for the other. You'll know. I'm sure you've tried everything, can I bring you some chocolate?? I don't think you live far.
I just found your blog through a comment you left on MckMamma's which is odd, because I never, ever take time to read the hundreds of comments she gets every day. My heart hurts for you and I understand a little of what you are going through . . . my three year old has a rare genetic disorder that causes tumors to grow on every organ in her body. She has seizures every day and has already had two brain surgeries to remove tumors. Your story jumped out because for one, your little boy is breathtaking! Wow! What a handsome fellow! But for many other reasons as well. We just got back from a surgical evaluation at UCLA. We live in Kansas and it was a long, and difficult journey. How has your inpatient care at UCLA been? We had a bad experience and since the surgeon that that we need is there, I'm hoping it was just a fluke thing?
I will be praying for your sweet family,
from one mom to another,
Lisa
Andrea- I read every post, but rarely comment because I never have anything profound to say or advice to give. I just want you to know that you are all in our thoughts and prayers. I'm sorry for all your stress and worry, but I'm so glad that the reason for all that stress (Owen) is still with you. You're a great mom. You can do this!
Robbie
I know nothing of Stanford, but lived near Seattle for 17 years which gave me the opportunity to work with a lot of the medical staff around the area (I specialized in Emergency Medicine and Sports Medicine). UW has some people at Children's and UW is amazing when it comes to medicine.
That's my two cents, and I know if you choose Seattle Children's that he'll be in good hands. My cousin had surgery there when he was a few months old and the care was wonderful.
I will pray that God helps you make the right decision in this difficult time.
Love and Prayer,
Melanie
I will be praying for you and your husband as you make this decision. And I will pray for Owen's heart to stay strong till a heart can be found.
I am so sorry you have to go through this. I still pray daily for God to lead you to the perfect location. That will continue.
Please let me know if there is anything I can do for you. I will also be praying that Owen starts feeling better (and you too).
Many prayers sent your way!
Not sure if this helps, but I had a long discussion with Beck's transplant doctor about anti-bodies (since that is our life (yours included) right now) and about anti-bodies before transplants. He said that he participated in a study on not treating anti-bodies before transplantation (he participated because he does not agree with not treating before hand) and he said that all who had a transplant with out prior treatment, did not live longer that three years. I asked him what transplant facilities would be the best to treat anti-bodies (thinking of you - giving him your options) and he was not hopeful about Seattle, but he knows the doctor for Stanford personally, and has a lot of confidence in him. We also talked about plasmapheresis, and he said that only a few hospitals will attempt this treatment on an infant. Beck right now is basically a trail for this treatment.
I know how frustrated you are...and all I can say is that anti-bodies suck! Why do they have to effect our little guys? I am sending lots of prayer for all of you. Please feel free to contact me at anytime, for I am in a similar, but different situation.
Prayers for Owen and the entire family. May God point you in the right direction...
Kristin
NE Ohio
Oh Andrea, I long for the answer to just pop up and things to be all taken care of for you...it's not fair, is it? I will continue to pray for answers, less confusion, and continued blessed care for precious Owen. You are so inspiring and your patience with all of this just proves your commitment and love for your son. Praying that all goes well this morning at his visit...praise God for wonderful doctors who truly care!
Love you & praying...
Oh, Andrea, I don't envy your position. The answers will come. From personal experience I have found that I have to make the decision first and then go to the Lord in prayer for confirmation. If it is not correct I know. Then I make a new decision and so forth. Maybe you could try that. I will continue my prayers on your behalf. Perhaps it just had to wait until tax season was done so your hubby could help. You may also want to get a blessing yourself. You are entitled to that as a daughter of God. The added help won't hurt. Perhaps you will get the additional thoughts, promptings and answers through a priesthood blessing. Hopefully I am not stepping over boundries in suggesting this. Thank you for your example of love and determination.
Praying for you and Owen during this time! Lots of prayers and hugs!!!
I'm glad you got this response from Dr. Hanlon as it's the kind of thing I've come to look for in consulting Drs. Good ones are not overly concerned with selling you on their facility. They won't hide their competency, but they also don't want you to seek treatment there if you aren't comfortable. They'd rather work to get you to the facility you are comfortable with. Praying for you in this decision.
First off, what an adorable little boy!! Do you do his hair in a mohawk or does it do it on it's own?
I just wanted to stop by and let you know that I am praying and have been praying for your sweet boy since I came across your site. I am also praying for you as parents and for your daughter.
Hey Andrea~ I can't imagine having to make this decision. I felt blessed that we just came here and that it was basically "easy" in the terms that I didn't have to make a decision. I feel very confident in the team here at Seattle! I received good advice from Joshua's cardiologist the day that we decided he was going to Seattle. He told us that, you need to make the choice and NEVER look back. You don't know what the future outcome will be tomorrow, in a month, in a year, in 20 years. But you need to view the choice that you make as the "only" one. You can't deal with the "what if's". James and I lived by this when we first brought Joshua here, and I suppose we still both do. This is where he had his care. God is in control not the Doctor's. If Joshua didn't make it, we had to know because it was God's decision to take him home and not because we chose the wrong hospital or path of care. I am praying for your family. If you do end up in Seattle, I have a hug for you! :) Leah (Joshua Garrison's mommy)
You are in an impossible spot. Which doctors have you talked to in Seattle? Or who have you talked to?
I am completely confident in the care here. I am happy to help however I can. Let me know if you need me to call any of the docs/coordinators here.
I agree with the idea that any major transplant center will be great- I know it is such a hard decision. We only had a day to make the decision where to transplant but it was basically made for us when it became an emergent situation. My advice- don't let it get to that point. Make your decision now and you will adjust to wherever you need to go. I also agree with the closer to home the better since my whole family was in Phoenix as well. We waited 20 days for transplant and stayed 4 months after. It was nice to have only a 5 hr drive between my family and I- financially as well. Remember, there will be a day when you look at this scary time in the distant future and even at times forget that your child has a heart problem after transplant. After being immersed in it for several months, I love those days when I watch my daughter play and forget those scary moments in bith of our lives ever happened... you will get to the other side of this.
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