Finally

April 6, 2010

I have been hounding the doctors for second opinions and bombarding them with questions for like 5 days now and they finally are going to have a conference with Stanford, about 2-3 other cardiologists, and the neonatology team here at UNM.  I have been bugging them about this since we heard from one of the Pediatric Cardiologists on staff that wrote in his notes that Joshua’s condition is non-survivable but “Guaranteed non-survival if surgery were attempted.” This comes directly from the notes from the Cardiologist in Joshua’s file.  Those are pretty concrete words that he is using and that is why I wanted others to look and see what their opinions are.  Some doctors have made us feel rushed in our decision but I told them that the main qualifier would be the collection of opinions and hard copies of these conversations or reports so that I have concrete evidence to back up these very BIG statements.   One of the big questions is if Joshua had more time to grow would it help his severe pulmonary hypertension.  Since Joshua is “stable” at the moment and has moved out of the realm of hour-to-hour and now is day-to-day or maybe even better on his current treatment, we have some time to really discuss this.  Finally the doctors are taking me seriously and have decided to have a big conference to discuss his overall condition and options of treatment if any at all.  This has been such a roller coaster and sometimes I don’t feel that the doctors take me seriously.  I have surprised them with my knowledge and understanding and have at the same time bombarded them with questions I wonder that they might even be asking.  We have been getting slightly different information from the cycle of doctors that come and go in here and I finally bugged them enough to sit down together and come to me with the overall consensus from many doctors from around the country.  All I had gotten so far was a hand-written note from the Cardiologist that was on last week regarding his conversation that he had with a Cardiologist from Cincinnati.  All it said was basically discussed condition with Dr.  soandso from Cincinnati and they agreed with my prognosis.  I have not received anything else after asking for it for 5 days straight.  I just want a straight answer.  This does not in any way change Joshua’s problems but at least I will have something hard in hand instead of all hearsay and opinion.  From the doctors’ perspective, I’m sure they have written him off.  Someone out there might not feel the same or maybe has more experience in this that is favorable.  So I will continue to hound the docs until I have everything I want before we make a final decision on whether it is the right thing to let Joshua go.  We know that outcome does not good for Joshua but I have to have this information before making a HUGE decision.   Anyway, please pray and I will update with what was said and the final consensus on Joshua after I hear today.

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8 Responses to “Finally”

  1. Julie Huizenga said

    Good for you, Jeff. God in His wisdom has given Joshua the right parents. and He has allowed Joshua to stabilize to give you and Kelli time to digest all the information that is given by Joshua’s medical team. Doctor’s usually do give “worst case scenarios” as not to raise hopes. I’m glad you are pressing them for information and making them go this extra mile. After all, Joshua is your child, and no one has his best interest at heart more than his own parents do.

    I am praying that God will impart to you His wisdom and that His Will Be Done through imparting this wisdom through you. May He be pleased to heal Joshua to journey through an earthly life to be a living testimony to God’s power and mercy. Day by day your family is making an impact through your interactions with all the medical personnel who clearly see who you put your faith in. God bless you for your faithfulness.

    I will be out of town and out of touch for an extended period of time, but will continue to pray for you.

  2. Great Aunt Carol Ann said

    Iam praying for all of you at this very hard time.God’s Mercy never falters, he knows all and feels and all of are pain. Prayers and and thanksgiving that you have been given this precious time to get to know this beautiful child, if only for a moment. Hold him near to your heart, for what ever the out come God Has a purpose for each one of us. God Bless you all, Great Aunt Carol Ann and family . I will not cease Praying!

  3. Jennifer Tenney said

    You should be very proud. You are being the best advocate I have ever heard. You are fighting for your son when he cannot fight for himself. No matter what you should know that you guys are being the best parents that anyone could ever hope for or pray for! I hope you get concrete answers and peace.
    Hugs and many prayers,
    Jennifer
    Mom to Dakota
    12-25-2008 RCDH survivor

  4. Kathy L said

    I am an RN and though I do not work with children, I think you are doing a wonderful job of advocating for Joshua. Doctors certainly are not God and they do have a tendency to be pessimistic when it appears there may not be quality of life (in their opinion). I am not saying that they are wrong, because it does sound like they have been very thorough and that they have been giving him excellent care. I am just saying that it is wise for you to insist on a number of opinions and not hearsay. You are a wise father (and mother) and I am proud of you, even though I don’t know you. Will keep praying for you to get the answers you need so you can be at peace in whatever decisions you make for his care. For what it is worth, I think you guys are amazing.

  5. A bunch of us here at Crossroads Church in Corona, CA have been reading your blog daily and praying for you daily. We have been putting your prayer requests on our 24hr Prayer Wall and people around the clock have prayed for your family and little Joshua. We just want you to know we are here for you even though you are many miles away. God Bless.

  6. Pam said

    Jeff & Kelli, words cannot express the heart wrenching emotion I feel for you and the family. I really admire you for being able to keep all of us so informed and Joshua is so lucky to such wonderful parents. Our thoughts and prayers are with you daily! Much love,
    Pam xoxoxo

  7. Brandee Glover said

    Great going Jeff! I hope you finally get an answer! Continueing to pray for your family and Joshua! I hope they can figure something out that will help him
    Brandee
    CDH mom

  8. nicolle said

    Good for you!!! You need to keep on them, we did very much what you are doing and that was the only way we could look in the mirror and know that we fought as hard as we could for our little man before making that huge decision! They don’t like people like us, but KEEP IT UP!!!! Make them think, explain, research, find other opinions. Glad to hear that Joshua is stable.

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