Sunday, December 14, 2008

Ultrasound Diagnosis

My blog with Tyler was pretty candid. I tried to share most of my emotions and thoughts, and for that, I am grateful to have a journal. While we don't have hard feelings, this is to record what would be helpful to us, granted, every story is different. We had our ultrasound on Friday and knew that something wasn't right. The tech kept leaving to talk with the radiologist, citing it on our "history." Danny asked very poignant questions, such as, "I don't see the brain. Can you show me the brain? Is the spine closed?" The tech skirted each question. Danny then asked, "Did you see anything abnormal that you need to talk to the radiologist about?" The tech responded, "there are some things that concern me but I can't tell you." This was difficult. We told her we would like a phone call, the anticipation was horrible for us and she promised that the radiologist would call with more information. We explained again that we had played the waiting game with Tyler and it was horrible for us. Danny reiterated that we had been told that in the past and would like a call as soon as they are able to tell us what they are concerned about. So we waited and no call came. Finally at 4PM on a Friday, I called and asked to speak with the radiologist. They were ready to transfer me and realized they had better identify my case. I tell them and explain that the radiologist was unable to talk to us at the end of the ultrasound because she was on her lunch break.

The receptionist left and returned, saying, "The radiologist is busy but they left a message with your OB who will get a hold of you with the results."

Frustrated, I sob, "We have been through the waiting game, that particular OB isn't in on Fridays and someone owes us the decency to at least tell us the body part they are looking at." I am grateful for the receptionist who tried again, put us in contact with the OB 5 minutes later, who apologetically gave us the prognosis. She told us they didn't want to give us the bad news on Friday because it might ruin our weekend. Can you believe that? I told her and am grateful to her for sharing the news, even though it was bad news. Being out of the "know" is the worst case in my opinion. First, it is not good practice to withhold information when stating and calling several times that we would appreciate to know. Second, others shouldn't judge when it is appropriate to deliver bad news. We are grateful for the weekend we had together. We cried some, we started the mourning process and have found peace and reassurance from the Lord.

Patients can read body language fairly well. Some can even read the ultrasounds like Danny who couldn't see brain matter during the scan or on the photos they gave us. Every radiologist should read this in my opinion https://plusweb.org/files/Events/Strategies%20for%20disclosing%20bad%20news%20-%20Dr.%20Woods.doc. Doctors go through so much training and yet have probably not been adequatly trained to deliver news. I am not angry, just hope that our radiologist doesn't make others who want to know results wait because they don't want to ruin their day. Well, those were my feelings about the ultrasound news. I will write more about these past couple of days and our emotions tomorrow. We are doing alright considering everything. Time for bed.

13 comments:

Trent and Kristi said...

Heidi I just want to let you know I am seriously amazed at your fortitude, strength, and faith. There are reasons for everything, and I know many are learning from your experiences including myself. Thank you for your example, and know my thoughts and prayers are with you. I can't even begin to imagine how you must feel, but like it says in Alma, Christ suffered all that, "he may know according to the FLESH how to succor his people according to their INFIRMITIES."

And I agree - I think it's better to be honest and forthright, and I'm surprised more health care providers don't have that philosophy. Good for you for sticking up for yourself.

Em said...

That is funny that we left comments the same time. That is very frustrating. We have never had to wait that long, but we have been the victims of having NO idea something was wrong. I know the techs can not diagnose, but they should be allowed to be more candid. Know we are praying for this sweet guy. Miracles happen, this I know. For us, the miracle was time, for others, it is overwhelming peace. Just know that we care and if you ever need to vent, I am a pretty good listener.
Heart hugs,
Emily

Robin said...

HEIDI!!!! I am so sad. There are not words to say what I feel, I just want to hold your dear little family in my arms, support you, love you all! Just yesterday Luke said," how' Tyler, how's Heidi? we need to see them soon.. I haven't seen Scot in so long..." UGH!!!
You are ever in our prayers, adn we love you very much!

Heather said...

How horrible.
You should really ask to speak with the medical director of radiology. I'm sure if there is something that can be changed or fixed with their protocol, you have the voice to inspire it. I'm so, so sorry you had to experience this on Friday and in this way.

I love you so much and will be thinking of you guys today as I hope you get more answers.

Ron and Lynn McMillan said...

Dear Danny and Heidi- I just wanted to let you both know that you are in our prayers at this difficult time. So many emotions come up when I think about what you must be experiencing at this time. I pray our Heavenly Father will give you both peace and that the spirit will continue to guide you in all that you do for this precious child. I am so grateful that you have such a strong faith and knowledge of the Saviors love for your family. I know this must be so hard. We love you and will keep you in our prayers. Love,
Ron and Lynn

Fenima said...

Heidi and Danny,

I choked up after reading your last entry. It's so hard, yet I can only see your faith increase through your writings. And what a horrible experience to wait for such news. I will keep you guys in my prayer. You guys are amazing.

Anonymous said...

When I read your last two posts, I immediately thought of an article that you may want to read.

“‘Don’t Let My Baby Die!’,” Ensign, Dec 2001, page 22

May you have peace.

Chelle said...

Ohhh, how I wish we could be there with you guys to cry with you. We have not stopped thinking about you and praying for you ever since we heard this devastating news. I don't know why certain people have to go thru certain things, and have so much on their plates at one time, but I am so impressed by your faith and that you are turning to the Lord and rejoicing in the Plan of Salvation instead of becoming bitter. I think it's okay to be angry for a while; it's part of the grieving process. But I know you guys, and I know you will stay close to the Lord. Your faith is so inspiring. PLEASE if there is anything we can do, let us know...even if you just want to talk or cry or vent. We love you guys so much!
love, Jared, Michelle, and Siena

The Boz said...

Heidi and Danny, I don't even know how to express how I feel right now. Shocked, sad, amazed, grateful for the church, inspired by your strength...all I can say is that my prayers will be with you. Looking forward to seeing you soon. We'll be there on Saturday.

Amy said...

The exact same thing happened when we got our first ultrasound of Sam. It was like we had to beg for the information. And we actually had to wait until Monday to go into our doctor's office to talk to him! I don't know why they do that, or why people often think they know better than you what you can and can't handle. I'm sorry you had to go through that awful waiting. And I'm so sorry about the sad news. You've continued to be in all of my prayers. I wish I was there to give you a hug in person or do something to help. We love you and are thinking of you.

Rick said...

Dear Heidi and Danny,

Wow, we certainly don't understand God's ways and purposes much of the time, but being a witness to your continued faith and trust in the Lord, I know that passing through such adversity assures you of great blessings. To my mind comes some of the last words of Elder Wirthlin regarding the Lords law of compensation. He said, "The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." I know that is true and there will be great joy "in the morning". Until then, our hearts and prayers are with you. We are grateful to the Lord for examples such as you. Your lives teach many sermons and give strength to all. I trust the words of the Savior, that he "will come to you and will not leave you comfortless. If we can help in any way, we would be grateful. With our love,
Rick & Lynne

The MacMizzles said...

Heidi,Danny, Scott, and Tyler, I am going to wrap my arms around you once again, and just hug you. We love you.

Also, I feel that your feelings are very valid, we are people, it is our body, our life, and therefore, it should be our information to get. How we deal with the information about our child, or our body is our right.

God bless. You inspire many.

Adam and Lisa said...

Danny and Heidi, I'm finally able to get to an internet. I'm just sobbing. I'm so sorry and I want you to know how much we're praying for you. I was just reading an article about trials and how we aren't given anything beyond what we can withstand, and it really makes me wonder about you. It just shows that you are stronger than most people to go through all this. A while back we had a lesson in church about spiritual gifts and as the teacher read off a few different gifts, we had to think of someone who had that particular gift. When the teacher said, "Faith", I immediately thought of you. That is a gift you've been given and I love reading about it on your blog. YOu are such an inspiration to so many. Yes you will be able to raise your little guy in heaven and it will be wonderful. I love you guys and hope you can feel some peace at this time.

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