I am exhausted. Emotionally and physically exhausted. It has been a long day. As I sit at the San Jose airport awaiting our flight home, I am just a little numb. I know after a good night sleep, and some clarity, things will be better.
We arrived in Palo Alto in plenty of time to enjoy a quick lunch on the hospital patio and play with the lobby train for a minute. Owen had vitals done and has had great weight gain.. 37.8lbs and 43" tall!! His sats were in the mid 70s, which is a bit lower than they usually are here, and his blood pressure was normal.
His echo went great and the echo tech took some really cool 3D images of his heart. Then his EKG went off without a hitch and he got to pick out some toys from his favorite treasure chest. Ducks that he calls "batwing and super wonder duck". They have entertained him all afternoon!
Onto our visit with the transplant NP... Owen is doing much better.. finally kicked the RSV... sats back to baseline.. his energy levels are back to baseline.... ect.
Our sweet Social Worker came in and we chatted about schools and she gave me some great resources for advocating and navigating the school system.
Dr Rosenthal came in to and immediately said... "tell me about his every day activity.." I went through our average day and then I heard the words I didn't want to hear, but I knew they were coming.
He said we had the option to stay and be admitted on Milrinone now, or we could go home and come back in a few weeks. It's inevitable. We discussed the pros and cons to admitting Owen and having him hospitalized. I knew this was coming.. things have been too good for too long. Owen's heart failure has been managed at home well {pat on my back}, but it's almost time
Now for the pros and cons....
PROS:
Owen would be bumped to 1A {highest priority} on the transplant list
Owen would be given milrinone or {magic M} as I like to call it because it's magical.
Milrinone helps improve the function of his heart, so it could potentially buy him more time on the list AND help give perfusion to his other organs {liver, kidney, gut}.
Owen would be closely monitored by his team at LPCH.
CONS:
Owen would be admitted to the CVICU for an indefinite amount of time.
Quality of life.. now he is actually living a somewhat normal everyday life at home.. that would end.
Exposure to illnesses and other infections that come with hospitalizations
Lots of pokes and tears
Once we start Milrinone, we can't go back.
I'd have to move to Palo Alto with Owen for an indefinite amount of time.
The other explanation that Dr R. gave was an analogy about surfing... if you miss the wave.. you will most likely never catch up to it. But if we catch the wave, then we might have a good chance of riding it out. Meaning.. if we wait too long, Owen may get sick too fast and we will run out of time. If we stay ahead of the wave, get him on Milrinone now and bumped to the top of the list, we may actually have a chance of getting a donor heart.
It is a tough, tough call. Not only for me, but for his transplant team. There is no exact science to this. Oh how I wish there was a crystal ball to show me how things will transpire.
Right now we are tentatively coming back to Palo Alto in 4 to 6 weeks to be admitted and started on IV Milrinone. Until then, I have a lot of prayers, thought and hopefully a peace that this is the right decision for Owen. Time to prepare and make arrangements for my family.
Prayers would be appreciated. Maybe we will get a heart offer in the next six weeks and all this worry will be for nothing. Please pray for that!!
Thursday, March 14, 2013
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23 comments:
Sending prayers your way! Will you be able to have jam visit since it will be summer? That might help a little. Prayers for you either!
I'm crying... Hugs to you. I have been and will pray for Owen. I have fallen in love with you guys and him. I hope you don't mind but I am going to share your prayer request with my facebook family. Oh how I wish I lived closer so I could see you. Stay strong Momma... you are one tough lady.
What a long and exhausting day. Even when you were half expecting to hear those words, knowing that it is time to admit him on Milrinone is a tough blow to accept. My heart goes out to you and I pray that you will have peace (and hopefully a heart offer!!) before you are forced to move out. Hugs!!
Dear Andrea,
I know you are right on track....Never doubt it, 4 to 6 weeks to prepare and get ready for Owen to have a new life full of energy. You may go through a few ups and downs, but in the end everything will be PERFECT.
Perfect timing and a perfect heart for Owen. Know this, believe this and live this thought every single day.
We are Praying with all our might for the most perfect outcome.
((((Hugs of faith}}}}
There was a family here in Boston whose daughter was on magic m and was able to be home as well. I can't tell you how they did it but she was able to for a few months and maintain hetlr status on the list. I believe her heart finally came a month ago. I think their blog is the Murphy family. it could suck at first but maybe you could finagle an option to stay closeby
Andrea I continue to pray for Owen (and Rachel and Teresa, also waiting for hearts) every night. Will be praying for your family as you make this next transition. ((hugs))
Andrea, I can't imagine your decision. I know you are in great hands at Stanford and with Dr. Rosenthal. Praying that the Lord will give you direction and peace. You are one amazing mom and Owen is one amazing kid!
So glad the RSV is gone!
Hearing you say you knew the words were coming shows you are spot on and can follow your gut!!!
We are praying for all four of you <3
(((Hugs)))
My heart aches for you and the position you are in. Praying for that heart asap x
((hugs))My heart aches for you friend. Sending thoughts and prayers for your family for the upcoming weeks and months.
Praying for you all!!
One other "pro" you forgot on the list...some sense of normalcy after the transfusion. I've read your blog for a very, very long time, and know you all will make the right decision. Prayers for you guys while you decide what to do. Trust in the Lord.
Praying for your whole family.
I wish I had words of wisdom for you, or offer what to do - but instead I can only tell you of my experiences. I believe there is no right or wrong way to make this decision for you and your family. What we found though was it was better to plan any admission than have to do it with urgency. Last November, we were referred much like you for a transplant. We planned to be admitted a week later, but that was kicked out once Olivia's labs came back. Her BNP was through the roof and it became an emergency. So far she is doing amazingly well and it likes like we caught the wave before it passed. I did feel better once we were admitted since her heart failure had gotten so serious so quickly - the Magic M bought us some time and she was a happy girl. I send lots of heart hugs and support that you find a happy medium for everything and especially Owen's heart!
Lisa
Andrea, you know I sooooo understand!! I'm tearful reaing about your day yesterday. It brings back so many bitter sweet memories! I pray that you feel the Lord's hands in your decision making in the days that lay ahead. Lot's of love, hugs, and positive thoughts being sent your way :) Call me if you need anything or just to talk.( ps....I loved our 5 month stay in Palo Alto and my family survived without me :) )
Prayers coming your way!
Tears in my eyes reading your words. {{{HUG}}} Always, always, ALWAYS keeping your family in my prayers.
God love and Bless your sweet little boy! Are prayers to your family continue! Stay strong Momma! We are here praying.
God Bless you and Owen. I know he is a fighter because I am as well.
God Bless Owen, He is a Fighter.
will say prayers for your family
I have been following Owens story for a number of years now. The strength of your family is an inspiriation to me. You are one strong mom. I will pray for Owen that the next few weeks go well and that Owen stays as healthy as possible. Peace be with you.
Glad the RSV is gone but so so sad that you will have to come back and stay for an indefinite amount of time.What a waity decision on your part.Praying things work out for Owen.
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