Update on the Conference

April 7, 2010

Ok, so I have pestered the doctors for several days now for some kind of documentation on their official opinion on Joshua’s heart defect and I still haven’t gotten anything.  I don’t know if this non-committal approach is common these days among doctors but this runaround they are giving me is pretty frustrating.  The Cardiologists finally got together with one of the attending Neonatologists as well as the Pediatric Surgeon and talked yesterday for about 1 hour about Joshua.  They wouldn’t let me sit in on the conference because of HIPAA since they discuss other patients but I wasn’t going to fight that (pick and choose your battles I suppose).  The Neonatologist came and spoke with us after the meeting and told us that in their opinion, there is no reasonable chance of survival given the last echocardiogram that was done on thursday of last week.  Also, the Cardiologist that is on this week has understood my position about wanting second opinions and documentation and he is starting to make things happen for us.  He also came to us last night and said he would try and talk with Cincinnati as well to get their opinion and give me something in writing.  I heard this morning that Cincinnati would be happy to do this and have requested that the Cardiologist perform an echocardiogram today and to send them Joshua’s documentation.  They will then formulate an opinion and write us a letter to that effect.  This is what I wanted in the first place and I can’t believe that it has taken me so long.  I have asked so many doctors so many times before this point for this exact thing.  I don’t think they are taking me very seriously or something because when I ask for some kind of documentation, the doctors sometimes give me very quizzical looks like, “What do you want that for?”  I tell them every time it is something I need in order to make the decision to let Joshua go so that if (when) I start to question myself, I will have this to fall back on. I think part of the hesitation is that they are not used to being questioned.  But this is my son so why wouldn’t I do everything I can for him?  Not everyone can be right given that we all make mistakes and I need someone to double check their thinking.  Hopefully we will hear something soon from Cincinnati officially (instead of a handwritten note that just states the doctor’s name and says he agrees with the prognosis).  We aren’t expecting to hear any different from Cincinnati but you never know.

By the way, Joshua pooped yesterday!  It took him 11 days to do but he performed!  Daddy was proud!  I wonder what this means regarding his bowels but I know something must work or at least did for a while.  I was going to talk with the neonatologists today about that.  Last night they had to turn the vent settings up slightly because he had high levels of CO2 in his blood gases.  They turned the delta P (pressure) up from 18 to 19 and he seems to be doing better.  Ph was also low but that is to be expected with high levels of CO2.  We have been continuing to hold the little guy as much as we can.  It is a major ordeal to hold him because of all the tubes and wires but it is totally worth it!  The other night I held him until 3:30 am!

So, this whole thing has been one roller coaster after the next.  It is just frustrating for me to be fighting with doctors for an actual official opinion but I guess in times where no one wants to take responsibility and step up to the plate I shouldn’t really be surprised.  On one hand, the doctors say that they will do anything we ask given Joshua’s condition (including taking Joshua to the children’s playground on the 6th floor so that he can be outside).  But when I ask them for documentation, which I know they have to have, they are giving me grief and a major runaround.  I will continue to ask until they provide it for me as well.  They don’t realize that I am hard-headed and very stubborn just like Joshua has been.  Joshua is pretty stable given his major issues and has now been with us for 12 days.  God is good in letting us spend time with him and to bless us with this gift that no one can take away.  Even if all the Cardiologists and Neonatologists say the same thing, which is what we expect, we love our boy and will love him to our graves.

Thank you for all your prayers up until this point and I ask for continued prayer.  Pray for our strength, for healing of Joshua and prayer for all of us to have peace in this situation, no matter what the outcome in the end.  I am going to fight for Joshua until everyone has given me official word that there is nothing they can do.  Thank you…

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9 Responses to “Update on the Conference”

  1. I know that you all keep trusting our loving God–He alone is worthy. My prayers lift you all up to our Lord and the hope that is in Him. Am praying for His miraculous healing in His time, will, and way.

    Holding you all in prayer for His strength, wisdom, and love.

    In Him, Kathie

  2. Tracy Meats said

    You keep after those doctors…you are doing the right thing in my opinion. You have every right to call a “care conference” with all of Joshua’s doctors in attendance and you should have been allowed to be in on Joshua’s part of the doctors meeting yesterday. As for documention, from my NICU experience, doctors write up general reports to surgical reports, there is documentation for every echo./MRI/xray/ect. that is completed. It is your right to these reports…my file is huge on Ian. I found it interesting to read their reports and findings, for they don’t tell you everything in rounds and discussions here and there. They have documentation and it should not be a big deal to disclose it to you, so keep after them.

    Celebrating poop! It shows that his digestive system is working in some way! I haven’t wanted to write this and please don’t take it offensive, but having grown up with a Down Syndrome family member, not all doctors are proactive in giving these kids a quality life. Many DS babies have heart defects and intestional malformations from the get go. Have you asked them if the DS is playing into their opinion, of no reasonable chance of survival? I am not a doctor and not offering medical advice, but just thinking about Joshua today.

    Joshua is a warrior and with everything going on inside of him and being early, he still is fighting. Keep loving him and showing him how much he is loved, no matter the outcome. Praying for strength and healing for Joshua and prayers for you both for peace and understanding with the decisions you face.

    (((HUGS))),
    Tracy

  3. Becky St.Francis said

    My family and I are praying for Joshua and and your family all the time. I think about Joshua all the time. I hope the best for you and your family, and we are here if you ever need anyone to talk to. I know how well the doctors can give you the run around they did it with my son. He is definetly a little fighter. Enjoy every minute with him even with the tubes and hoses. I only got to hold my son once and it was when he was taking his last breath of air. There are really hard decision that you have to make and only you guys know what is right for Joshua. Dont let anybody change your decisions. I hope everything goes well for Joshua and his family. Hang in there little man, be strong show everyone what you got. (((HUGS))) Becky

  4. Loretta Lamb said

    So glad to hear you are being a pain in the butt to the doctors. Seems like for everyone nowadays that you don’t get a say in your own healthcare let alone when advocating for someone else. Keep doing it and make the doctors accountable for their decisions. You have that right.

    We’re all praying for you here in Mom2Mom and at church…for wisdom, guidance, divine healing and rest. Enjoy all the time you have with Joshua. What a blessing!

  5. Brandee Glover said

    Its so ggod you are so stubborn it seems to be what they need! So glad you get to hold Joshua I never got to either until Gwen was gone, So happy to hear how strong joshua is fighting and that he pooped I know the little things are sometimes the most exciting! We will continue to pray for your family and Joshua as well! Keep on pushing the doctors you are doing a great job!

  6. nicolle said

    I agree with Tracy, you can’t be up these doctors butts enough. MAKE them tell you EVERYTHING, question them, ask why. Don’t take what they say as the right answer, from what it sounds like you aren’t, keep it up! I can’t stress that enough. You should call for a care conference whenever you want one! If you feel like they are doing something to your standard tell them. You are the parents = in charge. They are there for Joshua and you= they are working for you guys, make them!!!

    Yeah for Joshua pooping!!! He is a fighter and is going to prove these damn doctors wrong. He is fighting still, and I know you can see that. That is where you are getting your energy from. Keep it up. Sending you love and hugs!!

  7. Cody Irwin said

    Hang in there guys, no matter what happens Joshua knows he is loved and cherished. Also no matter what happens he is loved by God. He is PERFECT in Gods eyes. He is a beautiful baby and me and my little girls are praying for the baby with the “hurt heart” I cannot predict the future or even begin to try to but i am praying for you. if there is anything you can do let me know please

    love you guys,
    God Bless,
    Cody Irwin

  8. Chris Condit said

    Jeff/Kelli
    Love you guys and we keep praying! i shared your testimony with our students last night – we talked about not letting our circumstances dictate our outlook on life. and your attitude thru all of this has been an incredible example for believers and non-believers alike. hang in there and know God is using this to Advance his kingdom!

  9. Diane Kolb said

    Jeff/Kelli
    You don’t know me at all. I’m connected via a FB contact. I work in the medical arena and have seen a lot. God works through each of us and his healing powers are present always. Perhaps it will be the healing powers you and will share if Joshua goes home soon and perhaps it will be healing powers he graces on Joshua. Dr’s are wonderful and experts in their given areas. God is an expert in all areas. Prayers to both of you as you struggle through this situation, the Dr’s for wisdom and guidance to provide you the letters you need and mostly to little Joshua for peace either here or as he transitions to our forever home. Please know your story has reached out to touch others and remind us that ultimately we will all meet one day. Why you…why Joshua we will know one day. For now, we believe in God’s immense love for each of us and have faith.

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