Today is my best day

So much happened this morning that I know I won’t remember it all, so I’ll probably be adding things over the next couple of days. BUT we have NEWS….BIG NEWS.

We went to Children’s Hospital this morning to see Ben’s cardiologist. The main goal, as we had stated a few entries ago, was to have another ultrasound on Ben’s heart and get him all checked out so we can change his meds (get him off the morphine and get him on something else that will take care of his symptoms but not have bad side effects or be addictive). SO…after much flirting with the ultrasound techs (Ben has a woman in every exam room…I swear…) we talked with Dr. Petterson. It seems that one of Ben’s heart defects, the coarctation (this is the one where his main blood vessel narrowed very severely) is BETTER. It isn’t normal, but the narrowing is much better, it has opened up quite a lot. AND the blood flow through this area is very very good! So it isn’t all NORMAL…but it is very good, very improved, and very functional. Check off thing one. πŸ™‚

Thing two: the other two defects ARE still there, they have not healed. BUT. Because the coarctation is better, the other two defects are actually something that Ben can live with. I stress live with, because the biggest news is that there is now the expectation that Ben will live for several YEARS!!!!!! I don’t think this has sunk into me yet…YEARS. My Ben will be here for years. Ben is going to be ____ years old. Ben is going to live.

Ben’s condition has been upgraded to chronic. This means that he will have a chronic heart condition for his entire life. There are several possibilities and things we may or may not see in the coming months. Right now he does breathe hard, and that might continue, it might not. Basically two things are happening: he has a lot more blood than normal flowing into his lungs because the two main vessels coming off the top of his heart are fused. AND the oxygenated and non oxygenated blood in his heart is mixing. Both of these may be causing his heavy/fast breathing. We are going to put him on Lasix, which will help clear some of the fluid (swelling) around his lungs. This will help the blood flow around his lungs, and may help his breathing decrease. OR he may just be a heavy breather because his respiration is due to his heart and not his lungs.

I’m getting everything mixed up…because it is so much to take in. What you need to know is that we now have a little boy who has a chronic heart condition that he will live with. The saturation of oxygen in his blood will always be a little lower, he will tire easily, and he will breathe heavily. But he will live, he will grow, he will go to school, he will continue to be strong and happy. His outlook is great. We don’t know how many years, but do any of us? Nothing is ever garunteed, and as Scott and I have said all along…we brought Ben home to live with him. That’s what we’re doing.

A couple more things. Because a coarctation (narrowing) of the aorta is usually treated with surgery immediately, it is rare to have one go untreated like Ben’s did, so they had very little clue that one would widen like this. Whether this is a product of Ben’s specific anatomy or something that would always happen, who knows. It just happened! Also, there is an article being published on Ben in a medical journal. I think we are going to get a copy of it, it should be out in the spring. Also, that little duct that was supposed to close after Ben was born and DIDN’T, which is why we thought he was still here? Well, it couldn’t be found today…so maybe it closed after all!

Sometimes doing nothing but loving is the best thing. Even the doctor said that we really did make the right choice, to take Ben home, love him, and see what happened. Ben’s body proved that it had it’s own agenda, and that the human body really is an amazing and humbling machine. We do not have any idea how flexible and how strong we really are. Scott and I never doubted our choice, but I know that it is scary to go without medical intervention. It worked for us to make this decision, and we are so grateful that things have turned out so well.

There is so much information we got today, and all of it was good. I cannot believe and would never have hoped that we would be at this point, but here we are. Ben is so strong, he is so amazing, and he is blowing all expectations out of the water. Stay tuned for more. πŸ™‚

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25 Responses to “Today is my best day”

  1. purlewe Says:

    first reaction.

    I’m crying I am so happy to read all of this good news.

    second reaction was to this statement: he is blowing all expectations out of the water

    I read “he is blowing big bubbles in the water.. and I LAUGHED AND LAUGHED!!

  2. Anonymous Says:

    My heart is racing with excitement!!!

    I can’t even tell you how excited I am. He is a wonderful kid with wonderful parents who now have WONDERFUL news!!! I can’t wait to tell everyone!!!!We love you Ben!!!

  3. Anonymous Says:

    My heart is racing with excitement!!!

    I can’t even tell you how excited I am. He is a wonderful kid with wonderful parents who now have WONDERFUL news!!! I can’t wait to tell everyone!!!!We love you Ben!!!
    the O’Gormans

  4. zoobily_zoo Says:

    How awesome!! I’m so thankful. You guys have done a great job helping him along, and he has been such a strong little guy! I myself also believe that so many people pulling together and praying for the same cause has definitely created some positive energy and change, too. What great news!!

  5. Anonymous Says:

    WOO HOO

    I am at work, crying with a grin from one ear to the next…. GO BEN!!!!

  6. Anonymous Says:

    WOO HOO

    I am at work, crying with a grin from one ear to the next…. GO BEN!!!!
    Angela

  7. Anonymous Says:

    OMG!!

    Wow, this is absolutely fantastic news, Kym, I’m so happy for you and Scott! So now what I guess this means is that Ben’s just really lucky, having had so many birthdays to celebrate already!!
    -roel

  8. Anonymous Says:

    Halleluia!

    I am thrilled beyond adequate words. And yet, somehow I’m not really surprised either. I had a feeling this sort of thing was happening. The Power of Love and prayer is beyond anything we can imagine and Ben has had a whole world of both. How very grateful you both must be. And we who love and care for you and Scott and Ben, are elated right along with you. You are good and loving people and I celebrate this amazing turn of events with you!!!

    Love,
    Carol

  9. hunterholstein Says:

    I know it’s odd for me to be at a loss for words, but I am. Wow. Ben said he has business to take care of, and it’s gonna get done.

  10. Anonymous Says:

    YAHOO!

    HURRAY HURRAY HURRAY!!!

    Ben has blessed all of us so much by sharing his life. It is SO exciting to know that there will be even more of that life to share!

    Thank you Kym and Scott for sharing your joy with each of us as well.

    ::jumping up and down and cheering::

    …okay, well, maybe I was just bouncing up and down in my chair, but I’m at work – must maintain a professional demeanor!

    Lots of Love,
    Jocie Baldwin

  11. purpletoweluser Says:

    oh wow, that is so amazing. Ben most definitely has an agenda of his own- to prove the doctors wrong! πŸ˜€
    a song comes to mind: “The power of love”
    that is so amazing and absolutely wonderful.

    Ashley Builta

  12. Anonymous Says:

    HI Randall Family-
    I have been following Bens progress over the past month or so( since I got the info about your journal). This morning I decided to see what he had been up to. When I read his newest prognosis, I got chills down my spine. I am SO happy about Bens good news. What a gift to know your little one will be here to share so much with you. Ben has truly been blessed to have two incredible loving parents. I’ve always been a strong believer that Love can make all the difference in certain situations and in Bens it most certainly has. Best of luck to all of you. One of these days, I look forward to meeting this incredible little guy. Take care.
    Jeanette(Moniques sister)

  13. Anonymous Says:

    Ben’s HEART

    I don’t mean the one beating inside him… I mean the one he share’s with everyone who loves him.. The best news ,a wonderful gift for all of us ..much love to you all.. Trish xxxooo

  14. dc_chick06 Says:

    This information totally made my night, especially after stressing about everything so much. I’m so glad that things are getting better! It makes me smile! I’m also glad that the walk went well! I’m definatly looking forward to the next update!

    -Brandy VC

  15. wmhockey10 Says:

    Hey Mrs. Randall! I found out through Brandy Watson that you had a L.J. about Ben and I got all excited! I’m so glad to hear all of this good news and I’ll be praying for your family! – Joe Renkiewicz

  16. xosmurfzruleox Says:

    awe, *tear*
    how amazing. =)

    what a strong boy ! good for him!
    -Nikki

  17. Anonymous Says:

    Wow, Mrs. Randall that is absolutley great news! I’m so glad Ben is doing so well. Are you going to be at the Homecoming game on friday? It would be great to see you πŸ™‚
    -Mark Smith

  18. Anonymous Says:

    mrs randall,
    im so happy for you.
    beyond words.
    i dont even know what to say.
    except that im so happy.
    and if im soo happy,
    you must be like overwhelmed with happiness.
    and i hope you are.
    we miss you!
    love,
    chelsea tegart

  19. Anonymous Says:

    Amazing

    I’m just getting caught up with reading about Ben. This is amazingly great news. I am very happy for your family. Life is simply amazing.

    Jake Larson

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